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Haematology Support Group

By Sheila, Daphne and Max, Group facilitators

The Haematology Support Group has met monthly for many years on a Wednesday evening, facilitated throughout this time by Sheila Hegarty, senior haematology counsellor and Daphne Earl, a volunteer and patient. More recently Max, a support and information specialist, joined the facilitation of the group. The group offers a safe space for people with blood cancer and blood conditions to meet, share experiences, ask questions and support each other.

Although Sheila and Daphne kept in touch with members of the group by email and telephone, some members expressed a wish to have an online support group as most of them were in the shielded group and were keen to make contact with others. The first online support group was held on 15 July and a second, in August.

People offered support and ideas at this meeting on how to manage the complexities of moving out of a shielded position whilst remaining safe. The same level of respect and careful listening to each other was evident over Zoom as there had been when the group met in person in the Support and Information Service. As facilitators it was difficult for us not to be able to make a welcoming cup of tea for people as they arrived, but other than that, the meetings have gone well with people expressing how pleased they were to be back in touch and able to 'see' each other again. The group hopes to continue providing a place where people can express themselves and be listened to.

Some members of the group thought that an advantage of having an online support group was that people who live too far away, or were too unwell to travel to the hospital could join in. But they also expressed their hope to be able to meet in person again when it is safe to do so.

The Haematology Patient Group is held on the second Wednesday of each month from 5.30- 7.30pm. New members are very welcome whether you’re newly diagnosed, are on treatment or are adjusting to living with a blood condition. If you’d like to join the online support group, or would like more information about it, please contact us by email at uclh.supportandinformation@nhs.net.

If you don’t use the internet, you can still get support, information or practical advice from a support and information specialist on our helpline Monday to Friday 10am to 4pm on 020 3447 3816. If you have an appointment in the Cancer Centre, you can drop in to the support and information service on the ground floor.


Creative writing

Emma-Praer Breger, Information and support specialist

Introduction

Receiving a diagnosis of cancer or a blood condition, and going through the subsequent treatment can bring up a host of new and complicated feelings. These can be hard to acknowledge and deal with. It can also bring old thoughts and emotions to the surface that perhaps you thought you had dealt with effectively before.

Living with cancer or a blood condition can change the way you view your lifestyle. People around you may treat you differently and the impact of side effects can change your quality of life. You may have had stop doing things you used to that helped you deal with certain emotions, such as playing sport or working. When your internal support system is compromised in this way it can be difficult to process what you are going through and many people find talking to friends and family difficult.

Under these circumstances many people turn to wellbeing to help. Wellbeing can be anything from mediation, crafting and light exercise. Wellbeing literally means ’in a state of being comfortable, healthy or happy’. Therefore, wellbeing means different things for different people. Practising wellbeing means doing something that makes you feel good and for many people creative writing helps them feel good..

What is creative writing?

Definition: ‘writing, typically fiction or poetry, which displays imagination or invention’.

Essentially creative writing is anything you write from your own mind. It can be based in reality, from your personal experiences, fantasy and perception. Imagine a painting of a tree. Every painting is different, the colours, textures and mediums are as individual as every tree and each is a unique representation of the same object. Put simply creative writing is a way to paint a picture with your words.

Examples of creative writing are novels, poems, songs, and scripts. There is no wrong or right and there are no rules. It is merely a tool you can use to express yourself using the medium of words.

The process of creative writing

For a lot of people beginning something is the hardest part of any process. A good way to start is by looking at examples. Read a poem, a play or a short story. Think about how it made you feel, think about what the writer wanted to express, what words impacted you the most. Think about, if you were given a subject matter, how you would make it your own.

The second step is to write. This can seem like a daunting task. So, the best thing to do, like with any new challenge, is to start slowly and try not to put pressure on yourself. For example you can start by writing a diary. Nothing too fancy, put down what you’ve done that day and how you felt. For example:

‘On Monday I potted my new geraniums and did some weeding. It felt good to be outside in the fresh air, but I felt quite tired afterwards. So I put my feet up and had a cup of tea. I felt better after my rest’.

You may feel that what you’ve written is a bit plain. However, over time, and with practice, even a simple sentence can become its own story as you get more comfortable with writing. For example those few simple sentences could become:

I woke up late this Monday. I couldn’t sleep very well because of the pain in my leg. So I felt very grumpy when I woke up. I didn’t really want to do anything, but the sun was shining and I had a new packet of seeds to plant. So I went outside. I was pleasantly surprised by how refreshing the breeze was and how warm the sun felt upon my skin…’

As you can see with time and patience a simple task such as going outside can become a story.

The third and last step is to keep going. Whenever you have a spare ten minutes or feel inspired, jot down your thoughts, feelings and observations. You may be surprised at how your writing develops and how putting words on paper can make you feel.

Where you can practice creative writing?

The short answer is anywhere. You can write at home, in the hospital, on a bus, anywhere you feel comfortable with. Lots of people like to write in a group. This is very useful, especially for a beginner. Writing in a group is a good way to bounce ideas around and learn techniques with people going through similar experiences.

How creative writing can make you feel

Tobias Wolff said, ‘A true piece of writing is a dangerous thing, it can change your life’.

As dramatic as that sounds, this quote holds true for many people. A study by Swasti (2018) concluded that ‘Creative writing can change the lives of people diagnosed with cancer undergoing treatment. The inner self finds peace after expression of thoughts and emotions, thus promoting healing’.

This study found that creative writing positively impacted the quality of life for cancer patients, helping to reduce depression and anxiety. A more recent study by Zhu (2019) also observed a defiant lift in patients’ moods after attending a creative writing course. These results are from scientific trials.

However there are a million personal testimonies from cancer patients on the web. Writing can relax you, transport you, and help make sense of what’s happening to you and the world around you.

What to write about

Your writing can be about anything. It doesn’t have to be about cancer, or your diagnosis or treatment. The wonderful thing about creative writing is, as I have already mentioned, that there are no rules.

Some people find it helpful to write about their cancer journey as a therapeutic way to deal with any emotions, thoughts and feelings that can be difficult to talk about. However writing about cancer isn’t for everyone. Creating writing is fundamentally the power of observations and thoughts put into words.

It can be helpful to think of a specific word, for example, rain. Visualise rain, think about how it looks, feels, smells and tastes. What does rain do? How does rain make you feel? What is rain to you? Is it an emotion, something tangible, a legend? Take a few moments to really focus on a word then simply let your thoughts flow onto paper.

Group work is particularly good for exploring this side of creative writing.

Participating in ‘word rounds’, ‘word association’ and ‘sentence beginnings’. For example, I was a long way from home… , can offer a lot of scope and support.

Conclusion

In conclusion, creative writing is, in essence, the freedom to write. It is a marvellous tool to help to unleash hidden and difficult emotions in a safe calm space. It is a great way to relax; a meditation of sorts. Your writings can be used to record your journey, to inspire others and to offer you piece of mind and a sense of wellbeing.

Why not try it out for yourself.

We are currently holding online creative writing groups once a fortnight. Visit our wellbeing programme page for more information about how to sign up.

Further reading and inspiration written by people who have had a cancer diagnosis:


Loneliness


Emma-Praer Breger, Information and support specialist

What is loneliness?

Loneliness is one word that encompasses many feelings. Loneliness could manifest in you feeling alone, disconnected or isolated from others and the outside world. It can grow into feeling of intense sadness, depression, and physical illness. One important thing to note about loneliness is that you can feel lonely even if you have people all around you.

Loneliness can happen to anyone at any time, no matter their age or circumstances. Almost everyone gets lonely at some point in their life. The Office of National Statistics states that 7.4 million adults have had their wellbeing affected through feeling lonely in the UK. (1)However it can be especially hard to deal with loneliness after a cancer diagnosis.

What are the different types of loneliness?

Researchers de Jong-Gierveld and Raadschelders, summarised in their book chapter that there are 2 main types of loneliness; chronic and transient.

Chronic loneliness can last for many years and is present no matter the situation; rather it is an internal cause. People who experience chronic loneliness may experience varying levels of intensity of loneliness, but there is always an underlying feeling that loneliness is always present.

 Transient loneliness, on the other hand, is experienced for short periods of time, and can come and go. It is usually the result of a particular situation, such as bad news.

What can trigger loneliness?

Receiving a cancer diagnosis can be a very difficult time. It can be frightening and overwhelming, and everyone reacts differently. You may find that you pulled away from the people you care about. It can be intimidating to those around you and they may go quiet as they don’t know what to say or do to help. A cancer diagnosis can also make you consider what and who is important in your life. This may result in relationships and friendships that weren’t quite right being ended.

The practicalities of receiving cancer treatment and the side effects can also affect your social life. You may find that the many appointments clash with your normal social life and/or the side effects make you feel too weary or poorly to participate in activities you normally would.  Side effects of some treatments such as alopecia or nausea can also sap your strength and confidence, leaving you feeling less inclined to socialise.

How long will it last?

These feelings can occur at any time of your illness, from diagnosis and treatment. Many people also struggle after the treatment has ended. The feeling of loneliness has no time scale, it could be fleeting or it could stay with you for a long time. Everyone is different and it is completely normal to feel lonely. It is important to not compare yourself to others or put pressure on yourself, everyone is unique.

No matter why you feel lonely there are lots of resources out there to help you feel more like yourself.

What are the first steps to overcoming loneliness?

In his blog, psychologist, Leslie Becker-Phelps, cites three steps for overcoming loneliness:

Awareness: This is the first step in addressing how you really feel. It is very hard to change a feeling if at first you do not recognise it and admit to yourself how you are really feeling. Although this seems easy to do it is in fact the hardest step to take. It can be very difficult to admit to yourself that you feel lonely.

Acceptance: Acceptance means to embrace the feeling of loneliness. It is no one’s fault and no one is to blame, it simply is.

Compassion: Be kind to yourself. Practice reminding yourself that others feel lonely, too. It is part of the human experience that most people share at some time or other. Treat yourself as you would treat someone else who felt lonely. Take care of yourself, and tell yourself that it’s ok to feel sad.

Tools and tips.

  • Structure your day.

This is especially helpful if you are shielding and have to stay indoors. Write a list of what you will do every day. For example, cooking breakfast or watering the plants. Having a structured day can help to make you feel more comfortable and your thoughts more ordered since you have a routine.

  • Mindfulness

Mindfulness is the practice of taking time to pay attention to yourself and your thoughts and feelings. There are many different ways to practice mindfulness. Some examples are meditation, yoga, breathing exercises and writing down or thinking about good things in your life. A study conducted by UnitedHealthcare concluded that mindfulness can help alleviate the feelings of loneliness in adults, improve sleep and reduce stress.

  • Do something you enjoy doing every day.

This goes hand in hand with mindfulness. Doing something you enjoy every day such as painting, reading or walking in the garden can inspire feelings of joy and optimism.

  • Join a group

Not only is joining a group a great way to meet like-minded people and build new relationships, they are also a fantastic way to feel connected to the world around you. Groups can be face to face, an internet forum or even Zoom (video) meetings. Dr Kellie Payne, Research and Policy Manager from Campaign to End Loneliness says in her article on the Campaign to End Loneliness website that; 'While there is something to be said about face-to-face contact, a lot of the feelings of connectedness can continue to flourish if you nurture those relationships virtually. Part of feeling connected is feeling understood and appreciated, and opening up about how you are feeling with others will help you to connect,'

  • Counselling.

Some people find it extremely difficult to talk about their feelings, even to their loved ones. Counselling can be a great tool to use if you are struggling with past, present, or future situations and negative thoughts and feelings. It can help you feel connected with someone and supported. By talking to a professional therapist, you can experience validation - it’s OK to feel this way, it’s not your fault and support is available.

  • Reach out to people.

Reaching out to people can be a very intimidating thing to do. However reaching out to someone via text, phone, email, or letter can be a really effective tool. It can help to not only to maintain relationships but also ignite the spark of past or new relationships.

Reaching out when you’re feeling lonely doesn’t mean you have to pour your heart out and go into details; it just means acknowledging how you’re feeling and leaning in to that need for human connection.

All of these steps and tips can be daunting to think about and act upon. The best thing to do is to start off slowly. Take each day as it comes and note, recognise and congratulate yourself on any achievements. Sending a text to an old friend or joining a forum might not seem like a big deal but it is important to acknowledge that it was a big and brave step to take. Remember to always be kind to yourself.

Further information and support.

Pop into the UCLH Macmillan Support and Information Service, on the ground floor of the UCH Macmillan Cancer Centre, for information on support groups, complimentary therapy, welfare and benefits, psychological support and practical advice. We are open 9am to -5pm, Monday to Friday. Our service is run by healthcare professionals such as cancer nurses and radiotherapists for advice on your treatment. It is also a great place to come and relax with a cup of tea and an informal chat.

Helplines: Talk to someone about how you are feeling

  • UCLH Support and Information helpline :020 3447 3816  open 10am-4pm. For practical advice, information or emotional support from  health care professionals.
  • Samaritans call 116 123 for free or email at jo@samaritans.org for emotional support.
  • Silverline: for people aged  55 and over, call 0800 4 70 80 90 this is a helpline and friendship service which is free to contact.
  • The Mix provides free, confidential help for under 25s online and via a helpline. Call 0808 808 4494, text THEMIX to 85258 or use their online chat service on the website
  • Try a befriender service. Various charities offer telephone and face-to-face befriender servicers, which put volunteer befrienders in touch with people feeling lonely
  • Join an online community like Side by Side. These communities can provide a place to listen and share with others who have similar experiences. They are available 24/7, most are free and you can access them wherever you are.
  • Contact Mind's Infoline or a local Mind to see what other types of peer support there may be in your area

Managing your emotional wellbeing during covid-19


Kate Hurst Macmillan Assistant Psychologist

The Corona (COVID-19) crisis can affect us in many different ways: physically, emotionally, economically, socially, and psychologically. When we face a crisis of any sort, fear and anxiety are inevitable feelings we may experience. These are normal and natural responses to challenging and uncertain situations.

We recognise that the support and care that you are used to having may have been disrupted since the COVID-19 outbreak, and this may have left you worried or uncertain about what’s next. You may also be missing the reassurance of going into the hospital clinic where you see familiar faces.

There is a lot that may feel out of your control right now, such as what might happen in the future, the actions of others or the world economy. When you focus on questions with uncertain answers, thinking over all the different scenarios that may or may not happen, or feel yourself getting caught up in fear of what might happen, try to shift your focus to things you can control.

What can you do to help feel more in control?

  • Developing a daily routine is key to feeling a sense of normality in this ever-changing situation. Try to start your day at same time that you usually would and aim to set aside some time each day for the things that are most important to you.
  • Keeping active has been proven to have a profound positive impact on depression, anxiety, your sleep and your overall mood. Keeping active can be in many different forms such as cleaning or walking up and down the stairs.
  • Relaxation techniques such as mindfulness and meditation can help relax your body and mind. They can help you to feel more present, emotionally calm and stable.
  • Distract yourself! Activities such as puzzles, colouring, listening to music, reading and cleaning are examples of short-term activities that you can focus your mind on rather than worry or fear.
  • Try to keep in mind some of the small things that you are grateful for during this time. Can you notice and appreciate the good things that may be happening in your life and that make you smile, even if it's for a short time? Before you go to bed, write down one or more things that have happened to you that day that made you feel positive or appreciative. 
  • Staying connected and supported. We all may need some extra help during this time. Don’t feel afraid of asking for support if you need it.

Even though everything may look slightly different at the Cancer Centre at the moment, we would like to reassure you that our service and support is still out there for you.

Our support and information specialists are still available to support you. We have set up a UCLH support and information helpline where you can get emotional support, practical advice and information from our team of healthcare professionals. If you feel frightened or lonely, or if you just want to talk things through, please call our team on 020 3447 3816 or email us at uclh.supportandinformation@nhs.net.

More advice, resources and support available to help you to manage your emotional wellbeing during the COVID-19 pandemic can be found in this document.


Diet and Nutrition


by Cameron Arbuckle, Specialist Dietitian at UCLH

People living with and beyond cancer often have many questions about their diet and nutrition. Many want to know what they can do to promote good health throughout and beyond treatment. Diet and lifestyle changes can be very empowering as they can help the individual to feel in control of this aspect of their lives. There is a lot of, often conflicting, information out there which can make it very confusing about what to eat and which sources to trust.

A healthy lifestyle has been shown to be associated with physical and psychological well-being, reduced risk of recurrence and

Reputable sources of information include the World Cancer Research Fund Continuous Update Project. It’s an on-going programme analysing global research on how diet, nutrition and physical activity affect cancer risk and survival. Also, Cancer Research UK’s reviewed of some of the complementary and alternative therapies

An oncology specialist dietitian is able to provide person-centred, evidence-based, expert advice on the diet needed to help optimise a patient’s nutritional wellbeing and quality of life. This includes those who are experiencing specific dietary problems as a result of cancer and/or its treatment with practical information as well as eating well beyond cancer.

A dietitian can be accessed at UCLH during an inpatient stay if referred to by your nurse, as an outpatient by your doctor, nurse specialist or via the Macmillan Support and Information Service.  There is also a talk on Food and Cancer at the regular Health and Wellbeing events.


Mindfulness for cancer patients at UCLH


By Maria Castilla Perez, Specialist Haematology Counsellor-psychotherapist

Since 2017, we have been running 8-week Mindfulness courses for UCLH cancer patients that have finished treatment. The next course will start on 11 March 2020.

Mindfulness is an innovative approach to dealing with difficulties such as, a cancer diagnosis and treatment. Mindfulness proposes that by becoming more aware of the moment, as we experience it, we are able to stay more in the present and enjoy life more fully. As a result of staying more in the present then it becomes possible to see situations for what they are and to see more clearly if you can take action to resolve it. With this kind of attitude there is an acceptance of what is happening now and less focus on what can go wrong in the future or what has already taken place.

Some of the patient’s expectations and reasons for wanting to attend the course in the past have been:

  • “I was overwhelmed with emotions and felt very alone plus unable to cope with how I felt”
  • “My purpose was to get peace with myself and others, get awareness and become more calm…”
  • “..To help me deal with the ups and downs of cancer. I hoped to learn ways to control my reactions.”

Some of them have found Mindfulness is useful in different ways:

  • “Just to have a break and appreciate the moment”.
  • "Helps me to unwind at the end of the day and to prepare for sleep”
  • “The 3 steps breathing or short meditations during stressful times in the day. Longer whole body scan ones for relaxing at night.”

You can book a place on the next Mindfulness course at the Macmillan Support and Information Service reception desk or by calling 020 3447 8663. Places on the course are allocated on a first-come-first-served basis. Once you have booked a place we will call you to do an assessment to check that the course is suitable for you.


Why is advice on benefits so important?


By Jelena Nenadic, Benefits advisor

I was looking recently at the latest National Cancer Patient Experience survey, published in September 2019. The survey has many interesting findings, but one question in particular stood out for me. Patients were asked the following: "Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?" A total of 60.5% responded yes, an increase from 58.2% the previous year. While this is encouraging, it is also the case that patients are much more likely to be given advice in other areas. For example, 81% said they were told they could get free prescriptions. This suggests there is room for improvement, therefore, in making sure patients are aware of potential financial support.

Why is this important? Evidence shows that cancer patients often have major out-of-pocket expenses, which many can ill afford. In-house research by Macmillan Cancer Support in 2012, based on a survey of over 1600 cancer patients, showed that 83% were, on average, £570 a month worse off as a result of the illness. The figure is likely to be higher today as a result of inflation and austerity cuts since then. The same survey showed that this burden is distributed unequally, falling especially heavily on those aged under 60, the employed, and people who had undergone chemotherapy or surgery in the past six months. A more recent 2015 study led by researchers at the University of Leeds also identified significant financial costs of cancer. As a result of these costs, patients often have to fall back on help from family and friends. For those who do not have this network, benefit support from the state becomes absolutely essential.

There is now a lot of top-level research on the factors that impact health. One of the pioneers in this field, Professor Sir Michael Marmot of UCL, has written extensively about how poverty and inequality are major causes of stress and bad for health, and how survival rates from cancer and other serious illnesses are linked to people’s socio-economic position.[1] Professor Marmot has argued convincingly that those who feel they do not have control over their lives are often unable to make healthy choices. In the “Marmot Review”, he shows the stark difference in life expectancy – seven years – between those living in affluent areas versus those in deprived parts of the country. The former Chair of the London Cancer Alliance, Dr Neil Goodwin, has made a similar point about the links among social deprivation, lifestyle choices and incidence of cancer. For example, the incidence of all cancers varies across London boroughs, from 283 per 100,000 in one borough to 450 in another. The major health inequalities we see in London and other parts of the UK are closely linked to social inequalities

In my role as a benefits adviser at Macmillan Support and Information Service (MSIS) I see some patients who worry about starting treatment because of the financial impact of cutting back on, or giving up, work and other cancer-related costs. Many patients worry about how they will pay rent, gas and electricity, and how they will support their children, if they have to stop or reduce work. I will never forget a patient who told me he would rather not have treatment because he thought he would lose his home if he stopped working. I therefore believe it is vital that we come together and do all we can to raise awareness about financial help and benefits even further. If we can get financial support to those most in need, it may go some way towards addressing the health inequalities we see all around us. Together with clinicians we can empower patients to tackle all aspects of cancer.

The benefit system in the UK is complex, can be hard to understand and is subject to frequent changes. Cancer patients often appreciate expert advice in navigating the system. And as we approach Christmas, when people often have extra expenses and when loss of income can be so closely linked to loss of dignity, it is vital we do even more to make patients aware of the financial help they are entitled to.


Self Care


By Deborah Denman, Support and Information Specialist

Deborah

A cancer diagnosis can have a significant impact on your life and those around you. It can be confusing navigating the hospital system and trying to work out what you can do to help yourself. This week is national self care week and what better time is there to find out what you can do to look after your physical and mental health better?

The Macmillan Support and Information Service has developed a wellbeing programme of classes, groups and courses which can give you advice and support to help you to manage the physical and emotional impact of cancer. We have support groups; workshops on managing fatigue, improving sleep and returning to work; creative writing and origami classes; yoga; and Look Good Feel Better (a class which gives you tips about skin care and make-up). We also have courses and a health and wellbeing event for people who have completed cancer treatment or are on maintenance treatment. If you’re unsure of what’s best for you come and speak to one of our support and information specialists. We can give you more information about what’s available and signpost you to things that will help. Here’s the link to our wellbeing programme which is updated every three months.

If you have questions about your diet, you can be referred to one of our dietitians. We have a team of psychologists and counsellors, who you could be referred to if you’re struggling with the emotional impact of cancer. We also have complementary therapies which can help to reduce stress and anxiety and manage some side effects of cancer treatment.

Macmillan have produced a range of booklets than can help you to maintain a healthy lifestyle. We stock the booklets in our Support and Information Service. You can also get the information online on the Macmillan website.

For more information:

  • visit our website
  • call 020 3447 8663
  • drop-in to speak to a support and information specialist


World Mental Health Day- The impact of cancer on your mental health


By Kate Hurst - Macmillan Assistant Psychologist

Catrina

This Thursday, 10 October, is World Mental Health day. We’re using it to raise awareness of the impact cancer can have on your mental health.

Having cancer means that you are faced with new situations and issues that may challenge and frighten you. People experience different reactions at different times and you may find you have sudden changes to your mood and how you feel. When you are dealing with a life-changing illness it is normal to go through various emotions. Common reactions include fear, anxiety, hopelessness, sadness, guilt and anger. It’s natural to feel overwhelmed as a diagnosis of cancer and its treatment can have a huge impact on your life, as well as the lives of the people around you. Some people may have thoughts of suicide as a means to cope with periods of feeling overwhelmed or trapped.

A recent study titled ‘Risk of Suicide After Cancer Diagnosis in England’ found a 20% increased risk of suicide in adult cancer patients compared with the general population, particularly in the first six months after diagnosis. The findings revealed that patients with mesothelioma, pancreatic, lung, oesophageal, and stomach cancers had the highest suicide risk. Receiving a diagnosis of disease that has a poorer life expectancy or a more painful treatment process may be a factor that increases the risk of suicide.

Based on these findings and since suicide is hard to predict, it is important that you access psychological support if you are finding it hard to cope, especially if you have a poor prognosis. This is particularly important in the first six months after a cancer diagnosis which is shown to be a critical period.

You may feel overwhelmed by everything that is happening but it is important to know that there is support out there to help you. Talk to loved ones, healthcare professionals, or other people who have cancer. The services that the Macmillan Support and Information Service provide can improve your coping skills; reduce depression, anxiety and pain; and can also potentially increase survival rates. For more information about what we offer, or how to be referred for psychological support, visit our other web pages.


The Wig Pod - by Nicola Panara, Wig and scarf tying adviser

I’m Nicola, the wig and scarf tying adviser for the Macmillan Support and Information Service. Last week Richard Murley, the chairman of Macmillan Cancer Support, officially opened our brand new wig pod. The pod is on the ground floor of the UCH Macmillan Cancer Centre and is a dedicated space where I can help people to choose a wig and fit a wig. The pod was funded by money generously donated to Macmillan Cancer Support.

Although it was only officially opened last week, we’ve been using the pod for a few months. We’ve had lots of comments from people telling us that they like the space:

“It feels like a real salon and it’s good that privacy is protected”

“[It’s got an] open and airy feel”.

We surveyed the first thirty people who used the wig pod and found that 100% found that it was easy to access, 100% felt that their dignity and privacy was protected and 87% thought it was nicely decorated. Since getting the comments about how it was decorated we’ve made some improvements by adding some colour panels to the inside.

If you’ve been told that you will lose your hair as a result of your condition or treatment and are a patient at UCLH you can be referred for wig advice. We can also give you advice about scarf tying and other headwear you could use. If you’d like to find out more please visit our website: www.uclh.nhs.uk/msis. You could also drop-in to the support and information service to speak to me or a support and information specialist.


Catrina25 July 2017

Overcoming sleep problems by Catrina Davy, Cancer Information Specialist



Recently it was reported on BBC news about new government guidance on sleep. They are planning to issue recommendations on how much sleep we should have and raise awareness about how we can improve our sleep.

At the Macmillan Support and Information Service, we recognise that a cancer diagnosis can have a significant impact on sleep. Worries at night, pain, changes to sleep patterns and different daytime routines may all be contributing factors.

We run regular workshops giving advice and techniques to help anyone affected by cancer to improve their sleep. We have a complementary therapy service which is available for anyone undergoing cancer treatment at University London College Hospitals. You can have an aromatherapy treatment or learn relaxation techniques; both can help to aid sleep. You can also speak to one of our support and information specialists who can give individualised advice and signposting to other services what may help. Call 020 3447 8663 to find out more.


What is Universal Credit?


By Esther Oghenekaro, Welfare Benefits Adviser

Universal Credit (UC) has been making media headlines since its role out over the recent months. Understandably the headlines have given some patients pause for concern and this negative impression of what the benefit actually is has led to some not wishing to make a claim for UC even though there is an entitlement.

There are many who are unfamiliar with the benefit system; many having never needed or wanted to make a claim but their circumstances have changed.  

Welfare Benefits are means & non-means tested financial payments made by the Department of Work and Pensions for those of working age, state pension age and those who are physically or mentally unwell.

Universal Credit is a new benefit which combines a number of old benefits called legacy benefits into one benefit for those of working age.

The Government’s intention is that by 2023 most people would have be moved over to UC or asked to make a claim if entitled.

There are some winners and losers, following the introduction of UC, below are a few examples:

Who wins when claiming UC?:   

  • Those starting a new job working less than 16 hours, would get assistance under UC, under the old systems of Working Tax Credit a working hours minimum would apply under UC there is no working hours lower limit.
  • 85% of childcare is paid regardless of the number of hours worked.

Who loses when claiming UC?: 

  • Those with two or more children will no longer get an allowance (previously child tax credit) for the third child, although there are a few exception to this rule.  
  • People with health issues, for example a cancer diagnosis, initially have to wait for over 5 weeks for the first payment. They also may have to attend Job Centre Plus and deal with the complexities of the UC application process.  These issues can lead to anxiety and financial worries, which further can exacerbate their ongoing health issues. 

There are still many issues with UC that hopefully, in time, will be addressed.  The example below highlights the problems with delays in UC, resulting in the increased use of food banks: 

Delays in initially payments of up to 5 weeks, has led to people having to use food banks

Citizens Advice have been funded to assist people with identifying potential entitlement to UC and can assist people to make the claim.


The Creative Word By Mark Matharu

A prompt would be given, “Summer Fun”. Now write about “Summer Fun” for five minutes. You could write a poem, fiction or real life stories it is up to you what you write in those five minutes. Each creative word session starts in a similar way, it doesn't matter about your writing ability as long as you write.

The creative word sessions at the cancer centre began at the beginning of 2013. It is run by Wendy, Genevieve and Vikky, and has been one of the more successful user groups at the cancer centre. The users of the group enjoy it so much they keep coming back for more, thanks to the tutors and the support received.

I joined the group at the beginning hoping that I could learn to write. Before I joined my writing was at the same level as signing a card or writing a shopping list. The last time I had written anything such as poetry or stories was at school. During my time with the group I gained the confidence to write stories and poems, I have even managed to write about real life events coming from my treatment at the cancer centre. Many people in the group have managed to write about their hospital life and how it has affected them, but they have also written about many other things. Some people are taking their writing out of this world writing science fiction or fantasy. In the creative word anything can happen.

The creative word summer term takes place on the 2nd and 4th Tuesday of the month beginning on the 14th of May. It is open to all patients, family, carers and friends. You can come along to one session and stay for as long as you like. It may seem daunting at first but once you start writing it may never stop.

Have you written anything about “Summer Fun” yet. Go on, see where it takes you.


Evidence-based medicine – by Hermanus Louw, Support and Information Specialist

What is evidence-based medicine?

Evidence-based medicine refers to the scientific process where your treating doctor looks at the most current scientific evidence for your condition. They organise and apply the information from scientific studies to help them make a treatment decision.

Your doctor will use their clinical experience to guide them through the process. You should feel part of this process. Tell your doctor your wishes and preferences with regards to your treatment.

What is best evidence?

There are different levels of evidence and grading systems. The following grading system is often used. It grades evidence from level Ia (strong evidence) to IV (weak evidence).

  • Ia: systematic review or meta-analysis of randomised controlled trials
  • Ib: at least one randomised controlled trial
  • IIa: at least one well-designed controlled study without randomisation
  • IIb: at least one well-designed quasi-experimental study, such as a cohort study
  • III: well-designed non-experimental descriptive studies, such as comparative studies, correlation studies, case-control studies and case series
  • IV: expert committee reports, opinions and/or clinical experience of respected authorities

The different levels of evidence help your doctor to decide on the probability that a treatment might work for you

Read more about the different levels of evidence and types of studies on the patient.info website.

Why is evidence-based medicine important?

Evidence-based medicine gives doctors a clear and reliable method to judge scientific information. It also gives them a formal framework to assess and apply evidence.

For patients, it gives reassurance that their doctor will use the best possible treatment for their condition, based on the best possible evidence.

Evidence-based medicine is also useful for people looking for alternative treatments instead of conventional medicine. Alternative treatments often rely on weak evidence. You could damage your health by having an alternative treatment that’s not based on good quality scientific evidence.

Social media and the internet often promote fad diets and simple cures for cancer. There is often very little scientific evidence for these treatments. They often rely on case studies. Case studies can spark interest in research for a new treatment but they have not been through a scientific process to say that they can work as a treatment.

Always discuss with your doctor the evidence for your treatment. This can give you confidence that you are receiving the best possible treatment. It can also help you to feel more in control as you are part of the process.

 


Dr Hilary Plant, Joint Head of Support and Information Service

As I leave my post here as Head of the Support and Information Service there are many things that will survive me. Not least our physical environment. I look at the chairs in the Living Room and remember the rainy Valentine’s night in 2012 desperately trying to choose the furniture that would be right for us here. We could never find the right table and so helped by the hospital’s art curator we commissioned some carpenters to make us a table that would last forever – and they made us our beautiful ‘forever table’ and threw in the chairs for free because they thoughts us a worthy cause. We have some wonderful art – but most important is our ‘falling star’ on the lower ground floor created for us by the sculptor Roger Partridge to say thank you for his 40 years of cancer care here. Its creation was a very life affirming project for him and for me – a very memorable evening when it was winched into place – recorded and cheered on by the writing group! Our space, so empty 7 years ago is now so full of amazing things to support patients and their families both during and after their treatment here. There is so much that goes on here in the Support and Information service. I have always look forwarded to every day with anticipation. Of course it’s the people I work with which are the thing I will miss the most. Such creative discussions, such knowledge wisdom and skill – used to the best advantage so many endeavours for the greater good.


Origami Group by Lizzie Burns

I was asked by a patient to learn Origami to pass onto others. She felt it helped her learning paper folding as a child in hospital and continued it as an adult when she was treated for cancer. She would make bunches of flowers to give to others in gratitude. She showed me how to make the traditional lilies with stems you can see in the Living Room. I would never have learnt unless I was asked, but quickly found Origami to be a motivating and powerful tool for well-being. Folding paper lifts mood as it requires total focus, and so brings you into the present moment. In making something beautiful you also feel a great sense of achievement and satisfaction.

A single session can be enough to discover the joy of Origami. I’ve been bringing objects I’ve made into wards and waiting rooms, encouraging whoever I meet to join me. I’m now able to offer an Origami group in the Living Room on Friday 29th March and 10th May from 2 to 3.30pm. In the session I can help you discover something new and special through paper folding. As one gentleman commented, by doing something orderly you also bring order into your mind. Most of all participating brings joy and laughter. You may even find yourself continuing, making gifts and passing on the joy.

Comments from previous sessions:

  • “felt calm”, “helps me focus on the present” “very helpful”
  • “it’s amazing - you can make such beautiful things from paper”
  • “Lizzie was so patient and managed to give us all her individual attention”
  • “feel inspired (and a lot less anxious!!) – I’ve learnt a new skill I can pass on, thank you!”
  • “Origami is fun and relaxing”
  • “Lizzie was lovely, so light-hearted and fun.  I was smiling and feeling creative before we even started”

Drop-in; everyone welcome!

Lizzie’s work is funded by the UCLH Charity


Cancer support groups by Kate Hurst

Living with cancer can be hard to deal with emotionally as well as physically, and can affect how you feel. Hearing the news that you or a loved one has cancer could trigger various emotions such as fear, anger and shock, as well as feelings of sadness and a sense of loss. Cancer support groups are meetings for anyone affected by cancer and are designed to help people cope by providing a safe environment to share experiences, feelings and get advice from others who are facing similar challenges.

Sometimes even if you do feel well supported by your family and friends, they may not understand exactly how it feels or you may have some concerns that you find too difficult to speak about with them. The nature of a cancer support groups allows you to connect with other people who can relate to your situation, often creating a sense of belonging that helps each person feel heard, understood and less alone.

Support group members could also exchange practical information and advice, which may provide a sense of control and reduce feelings of helplessness. Groups can help you feel more informed about cancer-related topics such as what to expect during treatment, managing side effects, diet and exercise, relationships, how to communicate with the health care team and family members.


The cancer support groups at UCH Cancer Centre are usually facilitated by professionals such as Macmillan Support and Information Specialists and site-specific Clinical Nurse Specialists, both with invaluable expertise and knowledge to explain and answer any questions in the moment. Groups regularly invite a guest speaker, such as doctors, psychologists, dieticians and physiotherapists, to present topics of interest and provide expert advice in cancer-related information and education.


Catrina

Financial difficulty at Christmas

Christmas is meant to be a time of good cheer and celebration, but the reality is very different for many people who are struggling to make ends meet. A recent YouGov survey of more than 2,000 adults in the UK showed that one in ten regularly worry and feel stressed in the period immediately before Christmas, which implies about five million people suffering these symptoms throughout the country. For those people who are dependent on benefits in order to get by, the pressures to spend a bit more at Christmas can be a great source of stress. People diagnosed with cancer are particularly vulnerable at this time of the year as they might be even more prone to facing financial difficulties because of a possible drop in earnings or the need to spend more on everyday costs like heating or travelling to hospital appointments.

At the Macmillan Information Centre, we have a service that can help to address this issue. Our welfare and benefits team, of which I am proud to be a member, offers a drop-in service that provides support and advice on all aspects of welfare and benefits to cancer and haematology patients and their carers. The service is available on Tuesdays and Thursdays between 11:30am and 2pm. We offer short initial discussions and can follow up with a further appointment (outside of these hours) if your situation is complex or if you need help in filling out a benefit application form. Our welfare and benefits team can outline the possible benefits for which you might be eligible and the ways in which you can access them. But we don't just offer welfare benefits advice; we also offer empathy and understanding for the needs of our patients. 


Health and Wellbeing Event

We are launching our newly-formatted Health and Wellbeing Event on 28th November for patients who have recently finished cancer treatment or for those on ongoing treatment. This event will run once every two months throughout the year.

The new format means that patients can now attend each of the five workshops included in the event. The workshops will teach relaxations techniques and give tips and advice to manage fatigue, improve healthy eating, become physically active and overcome sleep problems. As well as giving helpful advice patients can share their experiences and learn from each other.

We hope that the new format will help patients to make small changes to their lifestyle to improve their recovery from cancer treatment or help patients to live better with ongoing treatment.

For more information or to book a place please call 0203 447 8663 or email uclh.supportandinformation@nhs.net.


Supported self-management follow-up pathway update

The number of people diagnosed with cancer is increasing, and the number of people leaving with and beyond cancer in London is expected to double by 2030. However the current service provision is not sustainable and may not meet patients’ needs. So, changing the way cancer patients are supported has become a national priority.

It has been 4 years since UCLH has started the supported self-management follow-up pathway (SSMP) or stratified follow-up. Since the pathways inception in 2014, nearly 400 patients have been referred over the following specialities - breast, lymphoma and prostate. Work is now underway to introduce this pathway in colorectal.

The supported self-management follow-up pathway (SSMP) enables patients to be on the best possible method of follow-up. They are given the education and confidence to ‘self-manage’ their condition through health and wellbeing events or end of treatment consultations following treatment. This not only promotes empowerment and recovery but also helps to improve experience and outcomes by personalizing follow-up.

In addition, patients on this pathway have fewer follow-up appointments, which means less inconvenience and anxiety related to attending routine appointments. They also have their needs met in a timely manner and are better informed about their disease, treatment and consequences of treatment effects.


23 Aug 2018

World’s Biggest Coffee Morning 2018



This year it’s cakes and aromasticks!

Unbelievably it is September already and one of the joys of September for us is the World’s Biggest Coffee morning! This year it will be held on Friday 28th September from 9.30am – 12pm in the Living Room. The Living Room is in the heart of the Macmillan Support and Information Service on the ground floor of the UCH Macmillan Cancer Centre, Huntley Street.

We have tried several venues for holding in the coffee morning here at UCLH but our favourite is in the Living Room which is such a comfortable space to relax, chat and eat delicious cake! Last year we had quite a spectacular array of cakes spread out on our beautiful oak table (we call it the forever table) which is just made for sitting round and drinking coffee and tea and eating yummy treats!.

This year our fantastic complementary therapy team want to introduce us to the benefits of aromatherapy through the use of aromasticks. The complementary therapists will be available with their expertise to help you choose the smell which is right for you and your mood. Aromasticks will be available for a donation – in the same way as the cakes.

An even more ambitious element of this year’s coffee morning is that we are going to try and reflect these beautiful aromas in the flavours of the cakes! Ginger, lemon, lavender, rose. But don’t worry there will still be plenty of chocolate and coffee!

If you would like to bake a cake (or bring some shop bought ones) then these will be very welcome indeed. Myself I am going to attempt a lemon drizzle and get my daughters on the chocolate brownies!

Please do come along on 28th we will look forward to seeing you.


 

Catrina23 Aug 2018

Health and Wellbeing Event 29 August 2018



By Maxene Wickwar (Support and Information Specialist)

We are holding our next Health and Wellbeing Event on 29th August. It is for anyone who is nearing the end or has finished treatment and for those on maintenance treatment. We hope to give you advice and information to help to improve your health and how you feel.

We run workshops on managing fatigue, improving sleep, healthy eating, being physically active, and returning to work and complementary therapy. We also have a session where people can talk to others, share experiences or just listen. Our team of support and information specialists will also be available throughout the day if you need some extra support.

If you’d like to find out more about the event or book a place please pop in to the support and information service, email uclh.supportandinformation@nhs.net or call 020 3447 8663.


 

Catrina25 July 2017

Meet Catrina



I recently started working as a cancer information specialist within the Macmillan Support and Information Service. Prior to that, I worked within the service as a support and information specialist.  One of the aspects of my job is to improve the access of information to patients with a cancer diagnosis, and their friends and family.

Places, like the Macmillan Support and Information Service, have great information for people to pick up. However, on occasions people may find it easier to look up information at home. In fact, in this digital age, more and more people are going online to access health information. A survey by McKinsley in 2014 found that 75% of the UK population go online to find information related to their health. It’s important to make sure this information is from reputable sources which will be accurate and up-to-date.

Developments I am working on within the cancer information service include creating patient education videos and online information. I’m happy to be involved in an area of health care which is developing in such an interesting direction.


Sharon3 July 2017

Health Information Week 2017: Navigating the internet when you’ve been diagnosed with cancer


Aneta Kolatorowicz, Macmillan Patient Information Officer

Searching the web for health-related information has become part and parcel of our everyday existence. But does the ease with which we find information on the internet really mean a more empowered patient?

The photography on view has been taken by young people attending two narrative therapy pilot workshops recently run in collaboration between UCLH Haematology Psychology & Counselling Service, Haematology Cancer Care Charity and Daniela Sbrisny, the UCLH Photographer in Residence within the Red Cell Haematology Services at UCLH and Whittington.

The workshops were a real success and some of the attendees have agreed to show their work in this exhibition. Refreshments will be provided and there will also be the opportunity for people to contribute to building “a wall of knowledge” about Sickle Cell to help extend public awareness about the condition.

Needless to say, caution is needed when navigating the internet following cancer diagnosis. In England, the Department of Health has introduced the Information Standard, a certification scheme for health and social care information. It serves as a ‘quality filter’ to help people decide which information is trustworthy and provides a quality mark in a form of logo. Organisations awarded with the certification and displaying the quality mark have undergone a rigorous assessment to check that the processes and methods they use to produce their materials are robust and generate information that is accurate, well-written, accessible, impartial and evidence-based.

However, only a fraction of organisations producing cancer information have the Information Standard accreditation. Does this mean all the other sources aren’t reliable? The answer isn’t a straightforward one. Some may still provide high-quality information that has been produced following their internal rigorous processes, often rigorous enough to be awarded the Information Standard quality mark. They just haven’t gone through the assessment which can be time consuming and costly.

Despite there not being a simple way to be sure if online sources are reputable, there are a few things to bear in mind when looking for information:

  • What type of organisation runs the website you’ve come across? What’s their URL address? Websites ending with ‘.nhs.uk’, ‘.gov.uk’ or ‘.org’ are mostly non-profit UK institutions, such as charities, government agencies or NHS organisations often providing unbiased information you can trust.
  • Can you tell if the information is evidence-based? Reliable information is based on scientific facts and research studies, and lists references from medical journals. Blogs and forums are great to share experiences and connect with others who may be going through the same things, but they are personal accounts rather than scientific facts. Remember that what has worked for someone else may not necessarily be appropriate for you.
  • Is the information up to date? Look for a date the information was published and if it’s more than two years old, it may no longer be accurate.
  • Can you actually understand what you’re reading or is the information full of medical jargon that is making it hard to follow? High-quality information is easy to understand and is meant to help you make decisions about your health and care. If you find that this is not the case, the chances are the information is aimed at healthcare professionals, or hasn’t been co-produced with patients or laypeople (people who aren’t experts in or don’t have detailed knowledge of the subject). Co-production is one of the most important steps in developing information; it ensures that expert and often complex medical information is presented in a way that will help you make the best choices for your individual circumstances

Most importantly, no amount of information can substitute for face-to-face conversation with your medical team and information you find online should never replace their advice.


Sharon14 June 2017

Seeing Red: Sharing the Experience of Living with Sickle Cell


Helen DeMarco Clinical and Health Psychologist

We are holding a Photography Exhibition for World Sickle Cell Day on Monday 19th June 6.00pm- 7.00pm. This will be held in the Macmillan Support and Information Centre, UCH Macmillan Cancer Centre, Huntley Street WC1E 6AG.

The photography on view has been taken by young people attending two narrative therapy pilot workshops recently run in collaboration between UCLH Haematology Psychology & Counselling Service, Haematology Cancer Care Charity and Daniela Sbrisny, the UCLH Photographer in Residence within the Red Cell Haematology Services at UCLH and Whittington.

The workshops were a real success and some of the attendees have agreed to show their work in this exhibition. Refreshments will be provided and there will also be the opportunity for people to contribute to building “a wall of knowledge” about Sickle Cell to help extend public awareness about the condition.

Please come along and take part in the event.

Future photography workshops are being planned and will be available to anyone using the UCLH Adult Red Cell Haematology Services.

Please contact Helen DeMarco, Team Lead for the Haematology Psychology & Counselling Service and Senior Clinical Psychologist for Red Cell Haematology Service via 020 3447 8872, if you have any queries.

Download the flyer here >


Sharon15 May 2017

Lavender oil


Sharon Findlow, Complementary Therapist

There are many essential oils that the Aromatherapists in the UCLH Cancer Services Complementary Therapy Team are fortunate enough to have at their disposal, but the most widely used oil is Lavender (Lavandula angustifolia), otherwise known as true lavender.

Lavender is an aromatic evergreen sub-shrub from the Labiatae or Lamiaceae family.    The oil is steam-distilled from the freshly cut, fully developed flowering blooms and stalks of the plant.  Lavender grown and distilled at a higher altitude (Highland Lavender) has the reputation of being the best quality Lavender as the oil is distilled at slightly lower temperatures preserving the ester content and it is this type of lavender oil that we tend to use at UCLH.

Lavender angustifolia oil is a colourless or pale yellow liquid and can be described as having a sweet, floral herbaceous and refreshing aroma with a pleasant balsamic-woody undertone.  The main chemical constituent is linalyl acetate and it is this that provides the restorative and sedative therapeutic actions that we may associate with lavender.  The essential oil is also beneficial for conditions involving inflammation, muscular aches and pains, insomnia, healing of the skin and has strong antiseptic and analgesic properties and is also beneficial for respiratory conditions.  In addition it has a harmonising effect on the nervous system in calming the mind, comforting feelings and alleviating fears.  Indeed it is probably the most popular and versatile essential oil in aromatherapy terms.

The UCLH Complementary Therapy Team Aromatherapists use Lavender essential oil in a variety of ways.  It is added to a blend of vegetable base oils to provide a comforting massage for children and adults alike.  A few drops are also added to a cotton wick inside an aromastick which allow the patient to smell the aroma at times of anxiety or to help them to sleep.   The aromasticks are very popular as they can be carried around with the patient.  The essential oil is also added to diffusers which are used in the Complementary Therapy outpatient treatment rooms or in a ward setting.

There exists a strong connection between the sense of smell and the brain; the effect of smell has a powerful influence on our nervous system.  The olfactory receptor neurons in the nasal sinuses (which also have direct contact with the outside world) are linked to the olfactory areas of the brain.   Only a few molecules are needed to have a substantial effect such as the recreation of memories and association and also may influence mood and evoke positive emotions.  

If you would like to find out more about our complementary therapy service, please call 020 3447 8663 or pop into the Living Room and speak to one of the Support and Information Specialists


Bev Wilson31 March 2017

Happy 5 year anniversary!


Hilary Plant, joint head of Service, Macmillan Support and Information Service.

The Macmillan Support and Information Service has been open for five years! It’s extraordinary how the last five years has sped by since we first opened our doors. In some respects, little has changed since we set out our initial vision to bring services together to provide cancer supportive care to patients and their families at UCLH just when they need it. Our on-going belief is that with the right support and information at the right time, people will be better able to manage their experience of cancer and its treatment. However, over the last five years our understanding of the ways in which we can provide this support to the broadest range of people in the way most appropriate to their individual needs has deepened and become much more efficient and sophisticated.

So, thinking back to those early days even before we opened, with cold rainy nights choosing our furniture (and sitting on the floor to plan before it arrived) and working out how we could bring together and integrate the pre-existing counsellors, psychologists, complementary therapists, welfare and benefits, wig fitting and information provision all under one umbrella service. We had a new and stunning space to work in – as well as an entirely new service to set up with the Support and Information Specialist team providing a drop in, in the moment support and information service as well as a programme of support. How have we done?

Well, beyond our most ambitious dreams. We had nearly 22,000 visitors last year seeing one in three people who attend the Cancer Centre for appointments. Through working together and promoting what we do, all our component parts have increased the number of people we see. For example, the welfare and benefits service growth has helped patients in real financial need and the psychological and emotional care team has expanded to support patients and their families who have moved over from the Royal Free Hospital. Our wellbeing programme has grown and diversified in response to the expressed needs of both staff and patients, building on the ever-popular creative word and yoga to include a walking group, more site-specific patients support groups and Health and Wellbeing Events providing a range of relevant workshops for people at the end of treatment. We evaluate all our services and recently it has been gratifying to see just how much positive impact that patients report after receiving sessions of complementary therapy. To coincide with our five year anniversary, we are commencing Chemotherapy Education for all patients and family to inform them about what to expect going through chemotherapy and provide them with information on how to look after themselves. For more information please look at our website; www.uclh.nhs.uk/msis follow us on twitter @supportandinfo and most of all please come in and see us. Our Living Room is open 09.30 – 17.00 Monday to Friday.

As ever we are grateful to the UCH Cancer Fund. The service receives most of its charitable funding through generous donations to the UCH Cancer Fund.

Watch our animation created specially for the anniversary:

 

 


Bev Wilson06 March 2017

Joining the Welfare and Benefits Team


Esther Oghenekaro Welfare Benefits Adviser, UCLH

Firstly I like to say I'm extremely excited to be joining the team here at the Macmillan Support and Information Service.

So a bit about me, I worked for over 10 years as a Welfare Benefits Advisor, in Camden for the Citizens Advice Bureau and for Disability Charities in North and South London. I am currently working part time for Lambeth Council within their Welfare Rights Team.

Whilst working within the Cancer Department of Royal Free Hospital (when I was a wee lass) it gave me an insight into the wonderful work that all the staff do, in order to make patients’ journey as comfortable as possible. My experience was some of the most rewarding and satisfying times at work.

I have a creative streak; I studied at the London College of Fashion, qualifying as a designer, in the late 80s. On leaving college, I lived in Italy Florence for 2 years, working as a designer. I continue to create items and sell these at pop up markets and stalls throughout the year.

First impressions with working with the team here at MSIS, everyone is compassionate about the work they do and have been happy to assist me with learning the procedures here.

I’m looking forward to getting to know everyone.


Bev Wilson18 January 2017

Time as an opportunity


By Lizzie Burns, Creative Specialist

As part of the Support and Information Service I encourage people while in hospital to use time waiting to get creative. Even a little piece of paper and a pen can help. Try doodling and not making any plan. You'll find patterns and marks appear and the results are endless and fascinating. It's a simple technique to encourage focus and can be fun if you can encourage others to join in with you too.

I visit people mostly on the wards to encourage conversation and thought about other things. For many, reading can be difficult to focus on, and after a while TV can be uninspiring. We're normally so busy in our lives, and can distract ourselves through even the simple act of making a cup of tea or tidying up. We lack these options when in hospital. Time is precious, so is there something new you can try? I've found many people enjoying colouring-in for adults long before it became popular as a satisfying and colourful challenge. If you're coming to hospital can you plan a few activities? Can you bring some things to do? What about making cards for others, or colouring-in or making something, or just a notebook and pen to see what writing starts to flow. Could you start a new creative project – or learn some origami? What about asking friends for ideas or if they would like to support you when in hospital to bring things for you to do at your bedside.

While there is much available for children with colourful wards, toys, charities, schools, play specialists and parents. For adults there are less opportunities and yet we can be so much more aware of our situation. I visit adults in wards and waiting rooms who are not with visitors with sessions to spark the imagination with simple ideas. I often use objects from nature for inspiration, and to get people talking. I encourage participants to think what else they can do while in hospital. Just doing something simple can bring joy and a relief from boredom. As one person described a session gave a 'holiday for the mind' and 'a really welcome and joyful distraction'.

Can you plan something new to do, and bring for your next time in hospital? Even bringing along a piece of paper and pen could get you doodling and who knows where that may lead.

My work has been made possible with great thanks to charitable donations and support from our fantastic team at the UCH Cancer Fund. We would love to see what you've made while you've been in UCH.


Bev Wilson08 December 2016

Christmas time at the Macmillan Support and Information Service


By Bev Wilson, Macmillan Support and Information Specialist

Whilst for many the Christmas period is a time of excitement, if you or a loved one are going through cancer treatment you may not be feeling this way. If you have a clinic appointment over the Christmas period, and you would like to talk, come into our living room in the Macmillan Support and Information Service. Here you will find our team of healthcare professionals who can listen to your concerns, offer emotional support, information and financial advice.

We are also here for relatives and friends visiting patients on the wards at UCLH. We are open 9:30 to 5pm, and you are welcome to come in and have a cup tea in our living room. We’re here to listen if you would like to talk. We also visit patients on the wards who need support and information, so if we can help please ask a nurse to refer you.

We are open Monday to Friday 9:30am to 5pm, but closed on the bank holidays- Monday 26 and Tues 27 December, Monday 2nd January. If you wish to email or leave a voicemail, we will return your message on the next working day.

Email: supportandinformation@uclh.nhs.uk

Phone: 020 3447 8663


Vikky Riley16 November 2016

Day in the life...Vikky Riley


Macmillan Support and Information CNS

A cancer diagnosis can turn a person’s world upside down– we are here to help make life with cancer the best it can be.

Our service, based in the University College Hospital Macmillan Cancer Centre, provides a wide range of advice, emotional support and information to patients, families or anyone affected by cancer. It is run by UCLH staff.

We offer a drop in service so on any one day (or hour) I could talk to someone about telling their child they have cancer, listen to someone who’s concerned about financial issues or getting travel insurance or talking to someone who has just been diagnosed with cancer and needs to talk about it and try and make sense of it all.

I have worked for 30 years in nursing, the majority in cancer nursing, and have witnessed how cancer can affect patients and their loved ones. After qualifying as a nurse, I went into general adult nursing in different settings, including some time at a hospice. I then went to Great Ormond Street before joining The Teenage Cancer Trust Unit at The Middlesex Hospital. That was 25 years ago and I’ve been at UCLH ever since, progressing to sister, CNS and nurse consultant.

The opening of the Cancer Centre in 2012 provided a new opportunity. I’d worked with young people for a long time, I felt it was time to work with adults again and explore opportunities to enable people to live as well as they can following treatment for cancer. More people now live for longer, but with the challenges of treatment. It’s a very innovative area to work in.

The team are calm, supportive, responsive and extremely knowledgeable. We treat every single visit as an individual visit – people can feel very differently depending on where they are on the cancer journey and may have different questions each time.

It’s very much about team work at the MSIS – the Support and Information specialist team are all qualified health professionals from different clinical backgrounds. This sets us apart from many other Information centres. We work closely with the wider team that includes welfare and benefits advisors, wig fitter, psychologists, counsellors and complementary therapists. The team work together, depending on the needs of the person they’re working with. Being a support for each other is really important. It’s an absolute privilege to work with a team that have the same shared values. Some days can be tough and emotionally demanding but we always share any concerns and do a daily check in to see how we are all feeling.

One of our key challenges is getting more people to know about the service. So many people say ‘If only I’d known you were here’… We can add so much to the patient experience and we can really support our colleagues so we’re working hard to ensure people know about us. One new way of doing this is a new pilot project to provide the service on an outreach basis. We will go to clinical areas to talk to people affected by cancer – whether it’s a cancer patient on a general ward, feeling vulnerable, or if there’s someone in hospital whose relative has been diagnosed and they want to talk about it – we will go to whoever needs us.

Our service is at the forefront of supportive care. There’s only one other centre, that we know of, that is staffed by fully qualified professionals. Our stunning environment is light, airy and peaceful. This really is the gold standard, the way it should be for everyone experiencing cancer.


Helen DeMarco19 October 2016

New Haematology Psychology and Counselling Service (HPCS)

By Helen DeMarco, Senior Clinical Psychologist

Having a serious physical illness can be a stressful experience that is difficult to cope with for patients and their families. Some people find it helpful to talk with a trained professional about how they are feeling, the support they need and how to better cope in living with their illness.

The HPCS is a newly established psychology and counselling service available to all UCLH haematology patients and their families to help them better manage the impact illness can have on their lives.

The team is made up of specialist psychologists and counsellors experienced in working with people with serious physical health problems who use a variety of different talking treatments to explore and better understand people’s thoughts and feelings about being ill and about receiving medical treatment, so that they feel better able to cope with the demands they face.

The team works with individuals, couples, families and groups and can meet with people either on inpatient wards, in outpatient clinics or during treatment in daycare.

 

The HPCS team members are:

  • Helen DeMarco – Team Lead and Senior Clinical Psychologist
  • Maria Castilla-Perez – Senior Counsellor
  • Sheila Hegarty – Senior Counsellor
  • David Jones – Senior Counsellor
  • Maria Parker – Team Coordinator and PA

People who would like to be seen within the service can be referred by their medical team, ward staff, through the Macmillan Support and Information Service or by contacting the HPCS team themselves.

Direct line: 02034478872

Email: haematologypsychologyandcounsellingteam@uclh.nhs.uk


NickGilbert12 October 2016

Fundraising to support the Macmillan Support and Information Service

By Nick Gilbert, Head of Fundraising, UCLH Cancer Division

Charitable giving is nothing new to the Macmillan Support and Information Service. We are, of course, extremely appreciative to Macmillan Cancer Support and their donors for the initial funding that helped us to establish the service.

Since then, we have been enormously grateful to the support and generosity of donors who have donated to our own charity, the University College Hospital Cancer Fund. As the Head of Fundraising for the Cancer Division, I am honoured and privileged to meet people every day who choose to support the Support & Information Service in their own way. They are grateful patients, family members, friends, advocates, volunteers, and partners—all touched by cancer, and all driven by the calling to support those going through it.

Some donors choose to make donations by organising events or taking on a challenge event themselves whilst others prefer to set up a legacy gift or make a direct donation to the charity. These acts of kindness are indeed greatly appreciated by us all and enable the service to invest in the workshops, provide additional education for our staff, and help those affected by cancer.

For more information about the University College Hospital Cancer Fund and to see how you can get involved, please visit our website at www.uclhcancer.org.uk or speak to a member of the Fundraising Team on 0203 447 1884 or simply visit them on the 5th Floor (Garden Side) at the Cancer Centre. We also receive additional support from Haematology Cancer Care and Teenage Cancer Trust for Complementary Therapy.

Whether you are a long-time donor or are thinking of supporting UCLH for the first time, thank you for partnering with us in our mission that every patient with cancer has access to the services that will help them manage the impact of cancer on their daily lives.


Nicola28 September 2016

UCLH hosts a World’s Biggest Coffee Morning

A guest blog by Emma Hook, a Macmillan Senior Editor, who volunteers with the Macmillan Support and Information Service

This Friday, from 9am – midday, we are hosting a World’s Biggest Coffee Morning in our Macmillan Support and Information Service Living room. In this blog, I’ll explain more about the event and why it’s so important for people facing cancer.

The World’s Biggest Coffee Morning is Macmillan’s biggest fundraising event. Last year Macmillan raised a whopping £25 million. Here are just a few examples of what your money can do:

  • £134 could keep a typical Macmillan information and support centre stocked with all the information resources it needs to support people affected by cancer for two weeks.
  • £285 could pay for a Macmillan Grant that helps a family affected by cancer take a holiday and enjoy precious time together.

It’s not just about fundraising though; a Coffee Morning is a chance to have a good chat over a cuppa and a slice of something delicious. This year we are hosting the coffee morning over three sites- the entrance of the main hospital, in the living room of the Macmillan Support and Information Service, and in the Education Centre at 250 Euston Road.

If you aren’t familiar with the services in our Macmillan Support and Information service provides, the coffee morning is an ideal opportunity to find out more. Our Living Room provides a calm and welcoming environment where you can sit and talk to one of our team about any worries you may have. Our friendly support and information specialists are all health care professionals, here to talk things through, whether you have questions about your treatment or have concerns about the impact of cancer on your life and on those around you.

We also run a programme of classes, such as yoga, fighting fatigue workshops and creative word. The initial funding for the service was partially provided by Macmillan, but it is now run by UCLH with additional funding from the UCH Cancer Fund and Haematology Cancer Care.

We are based on the ground floor of the University College Hospital Macmillan Cancer Centre, and are open 9am to 5pm. You don’t need an appointment, just drop in. For more information, call us on 020 3447 8663. You can also follow us on twitter: @supportandinfo


Nicola15 August 2016

Wig and Scarf Tying Service

By Nicola Panara - Wig Specialist and Macmillan Support and Information Assistant

I run the wig and scarf tying service at UCLH for cancer and dermatology patients. I am based in the Macmillan Support and Information Service on the ground floor of the Cancer Centre and offer a flexible service for patients who may lose their hair as a side effect of treatment.

As a beauty therapist and hairdresser by background, I pride myself on providing a high quality service. If you know you are likely to lose your hair, the best time to see me is before your hair falls out so I can see your natural hair colour and style. Once I have received a referral from your clinical team (although you’re more than welcome to pop in and see me at any stage), the first step is a consultation to discuss what you would like and I can help advise you on the styles and colours that will suit. We have a range of different wigs available to order.

Once your wig arrives I provide a fitting service and teach you how to put the wig on and how to take care of it. I recognise that losing your hair can be very difficult, and I am sensitive to the emotional impact it may have. I do not rush these appointments and want to make sure you are happy with the wig before you leave – there is no pressure or obligation. I will try my best (with my personality) to make the whole process as stress-free as possible!

If you would like to find out more about the service you call 020 3447 8663, or pop in and speak to me. There is a charge for wigs, but some people are exempt, please refer to the wig service page for full details.


Emily15 August 2016

Interning at UCH Macmillan Cancer Centre, Support and Information Service

By Emily Robson, Trainee Health Psychologist

As a Trainee Health Psychologist at UCLH, my role varies from day-to-day as I manage my supervised training with the academic requirements of my course. I am a full-time doctoral student at City University London but I spend Monday to Thursday based at the Macmillan Support and Information Service (MSIS) working alongside the Specialist team in the Living Room.

I help with the day-to-day running of the Living Room by assisting patients, relatives, friends and carers access the support and information that they need. I’m also involved with a number of outreach projects - ensuring that people know about the service and support that is available to them, and evaluation projects – collecting patient feedback and thinking of new ways to evaluate and improve the services that we offer.

Most recently I have helped to develop the diet talk, which features within the wellbeing programme at MSIS, into a series of three individual workshops that cover a range of diet and cancer related topics. The new workshops have been well attended and some positive changes have occurred among those who have attended.

As part of my two-year placement at MSIS I will also be undertaking my own research study, which will be exploring the impact of receiving group interventions, such as yoga and creative writing. Over the next 6 months I will be recruiting patients to my study and carrying out focus groups to ask participants about their experiences of attending a group.

I am now almost half way through my placement at MSIS and I have learnt so much already from all of the wonderful people that I have met. Drop by the Macmillan Support and Information Centre to say hello, have a cup of tea and access all of the information that is available!


Catrina08 August 2016

Fight Fatigue Workshop

By Catrina Davy (Macmillan Support and Information Specialist)

We run a fatigue management workshop once every two months for patients who have had cancer treatment. The workshop gives advice and tips to help to improve energy and techniques which help people to better manage with the energy they have.

There is an opportunity to meet others who also experience fatigue, share experiences and pick up tips that they have had found helpful, themselves.

The next workshop will be held on Wednesday 7th September at 14:00.


Siobhan Cowan-Dickie14 July 2016

Health and Wellbeing Event 25 July 2016

By Siobhan Cowan-Dickie (Macmillan Cancer Information Specialist)

We’re holding our first Health and Wellbeing Event on 25 July 2016 between 10 and 5pm. This event is for anyone who has finished their cancer treatment or is nearing the end of treatment.

The Health and Wellbeing Event is designed to address some of the issues or concerns patients have told us they have at the end of treatment. There will be workshops on diet, fatigue, becoming more physically active, work and cancer, sleep, and relaxation. You choose which workshops are most useful to you. There will also be a complementary therapy session on hand massage, a chance to meet various charities who provide support, and a session with clinical nurse specialists.

We believe that you are the best person to decide which parts of the day will be most helpful to you. Therefore if you would rather not attend the whole day you can choose the parts which will be more useful.

To find out more, come in and speak to one of our specialists, email , healthandwellbeingevent@uclh.nhs.uk or call 020 3447 8663.


KatieSutton07 July 2016 

New approaches to follow-up following treatment for cancer

Katie Sutton, (Macmillan Project Lead)

Here at UCLH we are setting up "supported self-management follow-up pathways" after cancer treatment for certain groups of patients. In this blog I will explain what that term means.

Previously all patients were offered follow up appointments after their cancer treatment had finished. These routine appointments generally continued for a number of years. We know that some people find these routine clinic appointments to be a source of anxiety, and others put off reporting worrying signs and symptoms if a routine clinic appointment is ‘not too far away.’ Evidence also suggests that cancer recurrence is unlikely to be picked up at these appointments, and is generally identified by patients themselves, in between routine check-ups. Supported self-management pathways (or stratified follow-up pathways) are supported by both the Department of Health and Macmillan Cancer Support, and are happening at cancer centres across the country.

Rather than attending routine post treatment follow-up appointments, eligible patients are offered an additional information and support at ‘end of treatment’ clinic appointment. They are also invited to a health and wellbeing day to increase their confidence to monitor their own wellbeing. Instead of attending routine appointment, patients can contact their specialist team whenever they need to. Any necessary tests, such as CT scans or blood tests will carry on as normal, and results given to patients and their GPs either over the phone or in a letter.

It is important to note that supported self-management pathways are not for everyone. If patients have specific concerns or health-related issues that make supported self-management follow-up unsuitable, then they will continue to have traditional follow-up appointments in the cancer outpatient clinic.

At UCLH, we currently offer supported self-management follow-up pathways for certain groups of people who have finished treatment for lymphoma, breast and prostate cancer. We are working on expanding this service to larger groups of patients in the near future.

The Cancer Follow-Up Redesign Project is being led by Katie Sutton (Macmillan Project Lead) and Claire Simpson (Macmillan Cancer Support Worker).


Rakesh24 June 2016 

Yoga for cancer patients

Bridget Clarence-Smith, Macmillan Support and Information Specialist and Yoga teacher

Each Monday we meet on the mat to have an hour of peace and restoration while we stretch and breathe. This is your chance to get away from your everyday thoughts and concerns, and gently allow your mind to settle. We have a lovely space in the Macmillan Support and Information Service in which to practice, and we meet at 10.30am on Mondays, and 4.30pm on the first and third Wednesday of each month.

If this appeals to you, come and have a chat with me. As well as being a British Wheel of Yoga trained teacher, I have been a nurse for many years, so I understand and can accommodate many of the challenges which cancer and its treatments can present you with.

It would be lovely to see you.

Om Shanti


Rakesh14 June 2016 

The Pillar Oncology Support Group

By Rachel Waters (Macmillan Cancer Information Specialist)

We have just had the third Pillar support group here in May and people are already saying how valuable they find coming along.

The support group runs on the fourth Wednesday of each month and was set up in response to many requests for a cancer support group at UCLH. We wanted to set up an ongoing support group for people affected by cancer; cancer patients, relatives, carers and friends. The group is also open to non-UCLH patients.

We researched what makes a good support group and shaped The Pillar around our findings. The group is two hours long. The first hour is an educational component where we have a guest speaker and the second hour of the group is the support component, for conversation and listening. So far we have had a dietician, a physical activity and fatigue specialist and a doctor of complementary cancer medicine talk to us. This month, on 22 June, our guest speaker will be a complementary therapist to tell us all about the benefits of complementary therapies. On 27 July we will have the dietician back again because we have so many questions for him!

When I facilitate the support group, it strikes me how much comfort and reassurance people get from just talking and listening to other people who have been affected by cancer too. People seem so relieved to hear “I feel like that too”.

The next Pillar oncology support group is on 22 June from 17.30 to 19.30. We meet around the table in The Macmillan Support and Information Service Living room.


Rakesh31 May 2016 

Support and Information for Carers

By Siobhan Cowan-Dickie (Macmillan Cancer Information Specialist)

Next week is Carers Week. The Macmillan Support and Information service is here for anyone affected by cancer or a red cell condition. This includes relatives and friends.

If you are a carer for someone who has cancer, or if you are the carer and you have cancer yourself, here’s how we can help you:

  • We offer a drop in service where you can speak to a healthcare professional about any questions you have about cancer, we offer emotional support and practical advice
  • We have a wide range of information booklets which include how to talk to loved ones about cancer, financial advice, and many other topics which may be of help
  • Our psychological and emotional care team provide support for carers (on referral)
  • Our complementary therapies are also available to carers.
  • We run a wellbeing programme which is a series of workshops and courses and many of these are open to relatives and carers. Our haematology and oncology support groups are open to carers too
  • You can attend on your own or with the person you care for.

If you want to find out more, come in and speak to one of our specialists or call us on 020 3447 8663.

You can also follow us on twitter @supportandinfo where we will be tweeting next week in support of Carers Week.


Rakesh24 May 2016 

Feel fitter workshop and walking group

Bryony Eedy, Macmillan Support and Information Specialist

The last walking group finished a few weeks ago and we are looking forward to starting again with a new group on Monday 23rd May.

We will begin the process with a talk from Neville who is an exercise instructor, on how to start exercising safely. He’ll give us all tips and ideas on what we can do to get going confidently. After the bank holiday we can all get going with walking, starting with a short walk around the lovely Gordon Square.

The last group loved this walk and we were able to look at the plants growing week by week. If people feel confident we can go further to Tavistock square in following weeks. We can walk back to the Cancer Centre for tea and coffee afterwards.

I’m really looking forward to meeting the next group, if you want to join then just give us a call or drop in.


Rakesh13 May 2016 

Welcome to Macmillan Support and Information Service

by Lallita Carballo and Hilary Plant, joint Head of Service Macmillan Support and Information Service

The Macmillan Support and Information Service is here for anyone affected by cancer or a red cell condition. It is our aim to help you access the support you need to manage the impact of your diagnosis on your day to day life. Our team consists of support and information specialists who provide a drop in service where you can talk things through and access information, a wig specialist, welfare and benefits advisors, complementary therapists, psychologists and counsellors.

Patients often comment that they didn’t realise what help they needed or could access until they found us. The easiest way to find out how we can help is to pop into the Living Room. This is a calm and welcoming environment where you can talk to one of our team about any concerns you may have about your diagnosis, your treatment, the impact on your life and those around you. This team is made up of health care professionals including nurses and radiographers. Some recent comments about us include:

“Thanks for giving us the quiet space and concern for us just to rest a bit”

“Thank you very much for professional and human real help, support”

Over the coming months we will be blogging about different aspects of our service so you can better understand what we offer.

We are based on the ground floor of the University College Hospital Macmillan Cancer Centre, and are open 9am to 5pm. You don’t need an appointment, just drop in.