GvHD resources and support organisations
There are lots of organisations and support groups to help you cope with symptoms and side effects caused by cancer and its treatment.
Cancer Research UK information and support
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
Cancer Chat is our online forum where you can share experiences.
Organisations who have information about GvHD
Anthony Nolan runs one of the largest bone marrow donor databases in the world. It has regional centres which are listed on its website. It also provides information about being a stem cell or bone marrow donor.
It is looking for people in good health aged 16–30 to join the Anthony Nolan register. In particular, they need more young men and people from black and minority ethnic communities to sign up.
General enquiries: 0303 303 0303, open Monday to Friday 9am to 5pm
Email: patientinfo@anthonynolan.org
Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website.
Support line: 0808 2080 888
Email address: support@bloodcancer.org.uk
Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support.
It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.
Freephone helpline: 08088 010 444
Chat via WhatsApp on 07500068065
General support and information organisations
For general health advice and information.
NHS 111 online gives information if you need fast medical help but it's not a 999 emergency.
NHS Inform gives information about illnesses, treatments and NHS services for people in Scotland.
NHS 24 is a confidential telephone health advice and information service for people in Scotland. It provides urgent advice out of hours.
Phone: 111
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form
Organisations that provide equipment
You can borrow toileting aids or a wheelchair short term from The British Red Cross. This might be for free, or they may ask for a donation in your area.
There are many commercial companies that sell equipment online, via catalogues or in shops. Here are some tips when shopping around:
- Ask an occupational therapist what they think might be best to meet your needs – your Nurse Specialist, district nurse or GP can refer you to an occupational therapist if you don’t have one
- Compare prices between different companies
- Check if you can return the item if it’s not exactly what you are looking for (this is usually if it is unused and in its original packaging)
- Look for a number to call if you are unsure about how to safely fit or use the equipment
The Disabled Living Foundation has an advice and information service on their website. This can help you when you’re looking for a specific piece of daily living equipment. They offer impartial advice and suggestions of equipment from reputable companies. You can also call them for advice.
British Red Cross services vary in different parts of the country. They provide medical equipment, transport and hospital escort services, home emergency personal care and home respite care. There are branches throughout the UK.
Support Line: 0808 196 3651 (Monday to Friday 10am to 5pm, Wednesday 10am to 8pm)
Living Made Easy is part of the Shaw Trust. It provides information and advice on equipment and aids to help with daily living.
Specific symptoms organisations
The Bladder and Bowel Community supports people living with bladder and bowel disorders and has a telephone helpline. The service is confidential. They can also give you information about stoma products.
They have a 'Just Can't Wait' card which allows holders access to toilets in shops and when you are out. It's free to order on the website.
Forward House
17 High Street
Henley-in-Arden
B95 5AA
Home Delivery Service: 0800 031 5406
Email: help@bladderandbowel.org
This is a UK support group for people with a colostomy. It provides information and support and booklets to anyone who has or is about to have a colostomy.
24 hour free helpline: 0800 328 4257
Email: hello@colostomyuk.org
General enquires: 0118 939 1537 (Monday to Friday 9am to 5pm)
A support group for anyone who suffers from chronic pain. They deliver self management training to help those with chronic pain.
Freephone: 0800 783 6059 (Monday to Friday 8.30 am to 4.30 pm)
Email: info@painassociation.com
A charity that is being run entirely by volunteers. They provide support, advice, and help to people affected by chronic pain and those close to them.
Telephone Pain line: 0345 603 1593 (Monday to Friday from 10am to 4pm)
Email: aopisat@btinternet.com
Write to: Action on Pain, 2 Mill Close, Terrington St Clement, Norfolk, PE34 4JG
Pain Concern offers information and support to people with pain and those who care for them. They run a helpline staffed by volunteers and have an online forum called HealthUnlocked for members to share experiences. You can listen to podcasts that feature interviews with experts and people managing their pain. You can also subscribe to their newsletter, Pain Matters.
Helpline: 0300 123 0789
Email: help@painconcern.org.uk
This organisation provides information and support for people who need artificial feeding. They also have regional support groups for PINNT members.
PO Box 3126
Christchurch
Dorset
BH23 2XS
Telephone: 020 3004 6193
Email: comms@pinnt.com
Organisations that can help with issues of sex and sexuality
Relate offers private and confidential counselling, and psychosexual therapy to help with relationship problems. They provide counselling over the phone, through a webcam or face to face at a Relate centre. Clients are asked to contribute towards the cost of their counselling sessions according to their income.
College of Sexual and Relationship Therapists (COSRT) provides information about what help and therapy is available for sexual difficulties.
Telephone: 020 8106 9635
Email: info@cosrt.org.uk
