Information for carers 

We know that lots of people do not see themselves as ‘carers’ in a formal sense. You might think of what you do as your duty or responsibility because the person you are caring for is a partner, family member or friend. However you see yourself, if you look after someone with a health problem, you might be able to get help and support. We hope the information below will help but if you’re still unsure about anything, please get in touch with the Patient Advice and Liaison (PALS) team.

 

 UCLH carers contacts

Hospital Based Family and Carer Support Worker – Camden Residents Only
For advice and support, particularly when planning to leave hospital

Telephone: 020 7428 8950
 
Patient Advice and Liaison (PALS) Team
General information, support and advice for all patients and carers

Telephone: 020 3447 3042
  • Can I get help to care for the person I am looking after?

    You may want to look after a relative but need more time to work or go to school if you are a young carer; everyone needs time to themselves. If you are over 16, you can ask for a Carer’s Needs Assessment from your local authority. If you are under 16, you can be assessed for help from your local authority if the person you are caring for has already had an assessment.
     
    These assessments are not tests. They are a chance for you to talk to social services to see if they can help you. The local authority then looks at the results of the assessment to see if you are entitled to any extra help to care for the person you are looking after.
  • What is a Carer’s Needs Assessment?

    At a Carer’s Needs Assessment, someone should listen to you talk about the caring role you do, the impact it has on your life and any difficulties you have now – or might have in the future – in caring for your partner, relative or friend. It is not a test on your role as a carer and you will not lose any benefits you already receive from this.
     
    Unfortunately, we are unable to provide a Carer’s Needs Assessment at the hospital. You will need to contact the social services department in your local authority and request an assessment.
     
    When you meet with a staff member from the local authority for your assessment, they usually meet with you separately from the person that you care for so you can speak freely. However, if you prefer you can ask the person you care for to be involved too. The local authority staff member should ask you some questions about your caring role and complete a form. This will help them to see what support you are entitled to.
  • What if I am a young carer?

    Young carers are anyone under the age of 18 who look after someone in their family with a health problem. The majority of young carers will be caring for a parent or for a brother or sister. They usually do more than just jobs around the house; they might help someone wash, get dressed and move around. They might also help their relative deal with their feelings by talking to them, listening and trying to understand their problems.
     
    We know that caring for someone as a young carer can be tough. If someone in your family needs to be looked after, it can be hard to say no. This might make you resent the person you are looking after and you might not have as much time to see your friends as you did before. Ideally, young carers should not have to do the same amount of caring as adult carers and they should not have to provide regular and substantial care to someone.
     
    The social services department in your local authority is responsible for providing the correct level of care to the person you look after. They can make sure the whole family feels supported and comfortable with your role.
  • When should I get a Carer’s Needs Assessment?

    If you provide regular and substantial care for anyone, you should consider having an assessment as soon as possible so you do not miss out on anything you might be entitled to.
  • As a carer, how much can I be involved in the patient’s care while they are in hospital?

    We will try to involve you as much as possible in the treatment and recovery of the person you care for. Involving you is important, as you are likely to know more about how they usually are than anyone else. However, the amount we can involve you depends on the amount of information the person you care for is happy for us to share with you.
  • Why does UCLH want to support carers?

    We recognise that carers play a vital role in supporting the patients we treat here. Carers are likely to know more about the patients than anyone else and the knowledge and experience they have of the individual’s health problems – especially if they are complex – helps us to look after them better. However, we also know it can sometimes be a difficult and demanding job to look after someone so we want to try and make sure carers are getting some help and support too.
  • What is a carer?

    We use the term ‘carer’ to describe a person who gives regular and substantial, unpaid practical and/or emotional support to someone with a health problem. Practical support can be anything from helping with personal care and managing money through to attending any care meetings with different professionals. Emotional support might be as simple as being the person they can talk to about the things that worry them. As a carer, you could be a partner, family member or friend of any age.
  • Can I share information about the patient with the hospital?

    We would always encourage you to share information about the person you care for with the staff members who are looking after them. It might help us look after them better.
  • Will you share information about the patient with me as their carer?

    We will try to share as much as we can by keeping you informed and up-to-date, but we have to find the right balance between keeping families and carers updated and respecting the patient’s right to confidentiality. To help us do this, our staff should talk to the person you care for and ask them what information they are happy to share with you about their care and treatment.
     
    Sometimes we are asked not to disclose any information. We know that this can be frustrating for you as a carer, especially when you are the person who provides day-to-day practical and/or emotional support. In these circumstances we will do our best to give information without disclosing personal details. If you think we are still not giving you enough information, please do talk to the person in charge of the patient’s care so we can try to find a solution that works for everyone.
  • Can I ask questions about the care and treatment you are giving the person I look after?

    Although the amount of information we can give you may vary – depending on what the person you care for is happy for us to share with you – we should always try and answer your questions as fully as we can. If you are not sure what to ask, you might find the following questions helpful to ask:

    About the diagnosis

    • What illness does the person I care for have?
    • What are the likely causes?
    • Will they recover?
    • What is likely to happen in the future?
    • Where can I get written information about this condition?

    About the care and treatment

    • What are the aims of the care and treatment?
    • What is your plan for treatment and support?
    • Who will be involved?
    • How long will the treatments last?
    • Are there any other treatment options?

    About medication

    • What medication is being used and why?
    • How often will the medication be reviewed?
    • What are the short and long term benefits?
    • Are there any short or long term side effects?
    • Can you provide me with written information about the medication?
  • Can I access the medical records of the person I care for?

    There is a fixed NHS process we would have to go through if you would like to request access to the medical records of the person you care for. This is because we take the confidentiality of our patient’s information very seriously and we would usually need the patient’s permission to release the records to you. For more information please call the Records Release Information Team on 020 3447 9849. The office is open Monday to Friday from 10:00 to 16:30. Please note that it can take up to 40 days to process your request after we have received permission from the patient and proof of your identity.
  • When can the person I care for leave the hospital?

    For outpatient appointments, you should be able to leave straight after the appointment.
     
    For inpatient care, you should be given an estimated date of discharge within 24 to 48 hours of the person you care for being admitted to hospital. If there is a change to their discharge date for any reason, you should be kept updated. A discharge assessment will need to be completed before they can leave, which looks at what the patient is likely to need when they leave the hospital. Many will only need a small amount of support but others might need a more comprehensive care plan. The person you care for should be fully involved in this assessment process and with their permission you should also be kept informed and given the opportunity to contribute as a carer.
  • What is a care plan?

    This details the health and social care support that will be provided to the person you look after. It includes the details of any community support, how often this needs to be provided as well as who will be responsible for care and how to contact them. Again, you should be involved and your views and concerns taken into account; including whether you are willing to provide care when the person you look after leaves hospital. Care plans should be reviewed at least annually, if not more frequently.
  • What happens on the day of discharge if the person I care for is an inpatient?

    The staff member coordinating the patient’s discharge should make sure that you both have a copy of the care plan and any medication or other supplies you need. This includes making sure that you are trained to use any new equipment. The hospital might be able to arrange for transport if needed and we will notify the patient’s GP in writing about the discharge.
     
    If the person you care for is being discharged into a care home, the home will also be told about the date and time of discharge, and have a copy of the care plan.
  • What if my caring responsibilities change after the patient is discharged from hospital?

    The person you look after should not be discharged from hospital until they are medically fit, their needs have been assessed and any support that they need has been put in place. Only then is it safe for them to be discharged.
     
    Our hospital staff should give you time to consider whether or not you want to or are able to care for the patient once they leave hospital. We can make other arrangements while you decide. If you decide you are going to provide regular and substantial care, you are entitled to your own Carer’s Needs Assessment from social services. If you think you are unable to provide the right care for any reason, you could still be involved in helping to shape the care plan. 
     
    Remember that you can ask the local authority at any time for a reassessment if the needs of the person you are looking after change.
  • Where can I find out more information or access support as a carer?

    There are lots of charities that provide help, support and respite to carers. Exactly what is available will differ depending on where you live but you can find some ideas of the things on offer below.
     
    UCLH Contacts
     
    Hospital Based Family and Carer Support Worker – Camden Residents Only
    For advice and support, particularly when planning to leave hospital
    Telephone: 020 7428 8950.
     
    Patient Advice and Liaison (PALS) Team
    General information, support and advice for all patients and carers
    Telephone: 020 3447 3042
     
    Local Contacts
     
    Local Authority
    Find your local authority and their contact details at the following website:
    www.gov.uk/find-your-local-council
     
    Camden Carers Centre
    Information, advice and support for carers in Camden
    www.camdencarers.org.uk
    Telephone: 020 7428 8950
     
    Islington Carers Hub
    Information, advice and support for carers in Islington
    www.islingtoncarershub.wordpress.com
    Telephone: 020 7561 5517
     
    Westminster Carers Network
    Information, advice and support for carers in Westminster
    http://carers-network.co.uk/ 
    Telephone: 020 8960 3033
     
    National Contacts
     
    Age UK
    Information and support for the over 60s
    www.ageuk.org.uk
    Information helpline: 0800 169 6565
     
    Alzheimer's Society
    Specialising in dementia
    www.alzheimers.org.uk
    Helpline: 0300 222 1122
     
    Carers Direct
    Information, advice and support for carers
    www.nhs.uk/carers
    0300 123 1053
     
    Carers UK
    Help and advice to carers in the UK
    www.carersuk.org
    Advice line: 0808 808 7777
     
    Carers Trust
    Support for carers and the people they care for.
    www.carers.org
    London office: 0844 800 4361
     
    Citizens Advice
    Local offices for advice/representation on benefits, debt and housing
    www.adviceguide.org.uk
    Telephone: 08444 111 444
     
    Contact a Family
    Information/support to families who care for children with a disability or special need
    www.cafamily.org.uk
    0808 808 3555
     
    Disabled Living Foundation
    Advice and information on equipment for independent living
    www.dlf.org.uk
    Telephone: 0300 999 0004
     
    Mencap
    Information and advice for people with learning disability, their families and carers
    www.mencap.org.uk
    Telephone: 0808 808 1111
     
    Samaritans
    A 24-hour helpline for those in need of help
    www.samaritans.org
    Telephone: 08457 90 90 90
     
    Young Carers
    Part of the Carers Trust specifically for young carers
    www.youngcarers.net
    Telephone: 0844 800 4361