Blog 

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.