Accessing NHS support services
“Supportive Care is an umbrella term encompassing the work of a broad range of healthcare professionals to address the changing needs of patients, their relatives and carers throughout the patient journey” (NICE 2006).
Key to accessing the right support for your situation is to build an open and honest relationship with your medical team at the hospital, treatment centre and local GP surgery. Please talk to people about the challenges that you are facing on a daily basis and ask for help, particularly at times when things change and therefore so do your needs – you will be surprised at how much support is available. Keeping a diary of symptoms to use as a basis for discussion is extremely helpful; this applies particularly to seizure patterns.
The best place to start when asking for support is usually with your hospital team. This is because the support services at your neuro-oncology centre will have expertise in brain tumours which may be lacking in your local area, and so staff will either offer you hospital based services, or be able to direct you to appropriate/local resources as required. You should have a named key worker who acts as your main point of contact at the hospital, and this is usually a clinical nurse specialist (CNS) in neuro-oncology. If you ever have trouble with appointments or accessing services then do get in touch with your hospital PALS office (Patient Advice and Liason Services) who are also there to help you.
For ongoing regular support such as counselling, then your GP surgery is the best way to access NHS services closer to home.
One of the challenges related to accessing NHS support services is that we are often unaware of the range of existing services, and therefore do not think to ask for them. We hope that the table below gives you an overview of what is available.
| ISSUE | SUPPORT SERVICE |
|---|---|
| Weakness / balance or mobility problems, fatigue |
|
| Psychosocial issues and reduced cognition (thought processes, reasoning, understanding and interactions with others) |
|
| Appetite/weight change |
|
| Hair loss |
|
| Pain issues |
|
| Vision affecting function |
|
| Difficulty with speaking and/or understanding, reading, writing; swallowing difficulties |
|
| Psychological / emotional issues for patients and carers |
|
| Welfare benefits/financial issues |
|
| Physical and cognitive issues related to Employment |
|
Ref: this table has been amended from that included in the BNOS (British Neuro-Oncology Society) Brain and CNS National Clinical Guidelines for Rare CNS Tumours, draft 2009.
Social Services and Government Support Schemes
To access Social Services support, you can either contact your local Social Services Department directly for advice, or ask for a referral via your GP. Their support will be extremely valuable over the years so do make contact as soon as you feel ready to do so, to make sure that you don’t miss out on any help.
It is well worth asking for a Carers’ Assessment as there are all sorts of ways in which you can access help both for the patient & carer, and it is very useful to have one Social Worker to help co-ordinate things for you. Help ranges from financial advice to care respite services, to changes in the home such as grab rails & numerous other smaller gadgets to help if you have co-ordination issues. You need to contact your local Adult Care Services Department via your local County Council (number will be in Yellow Pages) to arrange for an Assessment. Carers’ UK publish a booklet which is well worth reading beforehand, called “How Do I Get Help? Carers Assessments Made Clear.”
Whilst you may not feel “disabled” when first diagnosed with a low-grade glioma, living with epilepsy or even minor balance and cognitive issues can be “disabling” as the term is broader than you may have thought. Although this may feel like a big step for you to accept on an emotional level, it actually means that you can access a huge amount of support from the point of diagnosis. Making contact with your social services department as early as possible will open the door to a wide range of services, starting with support to keep you in work (including help with travel if you have lost your driving licence due to a seizure), and an overview of the benefits available to help ease daily living.
If you require information or help regarding financial and social support, an excellent overview is the website DirectGov is the main portal for information about services covering:
- Employment support
- Financial support
- Education and learning
- Rights and obligations
- Motoring and Transport
- Everyday Life and Leisure
- Home and Housing Options
- Health and Support
- Travel holidays and breaks
- Disabled parents
Financial support
For further help in applying for benefits, you could contact your nearest Citizens’ Advice Bureau. Some Bureaux offer help via email or telephone to save you having to travel to see them in person. www.citizensadvice.org.uk
Your local hospice is an extremely useful resource for all sorts of services, often including help with applying for benefits. The link below also contains useful information about many related topics that may be of use to you. www.hospiceinformation.info
Turn2Us is a charitable service which helps you access the money available to you – through welfare benefits, grants and other help.
Their free, accessible website has been designed to help you find appropriate sources of financial support, quickly and easily, based on your particular needs and circumstances. www.turn2us.org.uk
GP Exercise Referral Scheme
If you are suffering from mild depression or anxiety and feel that exercise would help, you can get free personal training by being “prescribed” exercise by your GP. There are around 1,300 schemes of this type in the UK. Click here for details
Once the patient or carer has been referred by their GP, the scheme organizers will make contact with him or her, and arrange an initial consultation with an exercise professional. Referral officers understand that many patients being referred will not be used to exercise, and will make sure the plan is appropriate for their fitness levels.
The patient will then be given free or discounted access to a range of leisure facilities for a period of time (usually 3 or 6 months). These facilities may include a gym, swimming pool, exercise classes or even options such as yoga, archery or belly-dancing.
Sincere thanks are due to the following people for their help with this section of the website:
Helen White, Speech and Language Therapy Team Leader at the Royal Marsden NHS Foundation Trust
Diz Hackman, Clinical Specialist Physiotherapist at the Royal Marsden NHS Foundation Trust
Julie Read, GP