Where to get SupportWhat resources are there for support?
As a patient, parent or part of the family you should be able to gain support from the group of professionals who work with the patient. They are known as a multi-disciplinary team (or MDT) and usually include nurses, social workers, play therapists and psychologists.
The patients GP will be kept informed by the hospital, they can be a useful source of support for the whole family as he or she may be able to refer you for specialised support locally if needed.
Counselling can be useful and your GP may be able to refer you to a counsellor, or a child psychologist if required.
It is not always easy to find the help you need and you may need to ask a few people before you find the right support for you.
There are a number of organisations already in place that provide support, information and guidance as this is not an area of our expertise we have listed several of these.
We welcome all those seeking support to our facebook groups: HistioUK – discussion or HistioChampions – celebration.
Paediatric oncologist/haematologist – these are doctors who treat children with cancers and blood disorders.
Psychologist/Counsellor – they may be able to help those who have difficulty coming to terms during their treatment. They also can support your family.
Nurses – there will be a sister, ward manager or charge nurse in charge of the ward in the hospital. Staff nurses, student nurses and health care assistants work under their direction. There may also be a community nurse who will visit you at home.
CLIC Sargent social workers – they are funded by the charity CLIC Sargent to support children and young people with cancer and their families. They provide this support to LCH patients and their families. Social workers can help with practical, emotional and financial problems families may face. This help includes help with obtaining the non-means tested Disability Living Allowance and a disabled person’s parking badge if appropriate.
Surgeon – they carry out operations and can take a biopsy or put in a central line.
Play specialists – they use play to help children cope with the experience of being ill. They can help provide toys, jigsaws, DVDs and arts and craft activities
during stays in hospital.
Community nurses – they are available in many areas and may be able to visit you at home, usually to take blood tests and monitor you.. This can be very useful as it can help minimise trips to the hospital.
Hospital school teachers – they can provide educational support for your child during extended stays in hospital.
Radiologist – they undertake scans and may also do biopsies.
Dieticians – can provide advice on what foods you or your child should eat to ensure they are getting all the nutrients they need.
Shared care hospital – although your main care may be administered by a specialist hospital, it may be more convenient for you to go to your local hospital for more routine treatments such as regular administration of chemotherapy, blood tests and dealing with infections. This can be a very effective resource, saving long journeys to the specialist centre and also provide medical help close at hand in case of infections. This is referred to as a shared care hospital and your consultant will arrange this for you, if appropriate.
GP (General Practitioner)/ Family doctor – as histiocytosis is very rare, your own GP is unlikely to know much about the disease, but your hospital doctors will write regularly to your GP to keep him or her up to date with you or your child’s progress.
They will continue to provide health advice and support for you as a family.
Paediatric Oncology Outreach Nurse Specialists (POONS) – these are specialist nurses who can provide support for you as you care for your child at home. They can visit your child’s school with you to explain your child’s condition and treatment to the teaching staff. They may also act as a liaison point between you and your hospital.
Oncologist/haematologist – these are doctors who treat patients with cancers and blood disorders.
We welcome all those seeking support to our facebook groups: HistioUK – discussion or HistioChampions – celebration.
Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.
Help ensure that we can continue to bring you this vital informational material, make a donation today