Health CommitteeWritten evidence from reMEmber (The Chronic Fatigue Society) (LTC 20)
Summary
Services in the community are not yet prepared or organised to receive patients who hitherto would have been treated in hospital.
At the same time CCGs are required to make cost savings which limits scope for improvement.
ME/CFS patients make little demand on hospitals, but services in the community for them are deficient in many areas. A national review of provision and implementation of reforms could save money in the long run.
Voluntary organisations are ready and willing to help commissioners of services.
Education is usually the answer to problems like obesity.
There is some integration across health/social care and other services but much more needs to be done. Welfare benefits are seen by many long term patients as their biggest problem.
An ageing population will cause increasing demand for health and social care services.
There is a need for closer integration between mental and physical health services. Treatment of the “whole person” is vital, and voluntary organisations can play a key role here.
Submission
1. Scope for treating more people outside hospital. The length of hospital stays has been dropping for many years because of advances in surgery and medicine generally. However, taking people with long term conditions out of hospitals and treating them in the community requires very sophisticated infrastructures which are not yet in place. reMEmber, along with other voluntary organisations such as the British Heart Foundation, Diabetes UK and Age UK, are working with a Clinical Commissioning Group in Sussex to identify local needs and how they may be met in the community. A key point here though is that the CCGs are required to make considerable cost savings over the next few years so the scope for necessary improvements may be limited.
2. reMEmber’s area of concern is the long term condition ME (myalgic encephalomyelitis) also known as Chronic Fatigue Syndrome. Very few people with this illness are treated in hospital (some would probably benefit from respite care but this tends not to happen). The treatment and care provided in the community is patchy and of varying standards. Some places still have no ME/CFS service. Children can be particularly badly affected by this illness but there are few services for them. There is little or no domiciliary provision for those who are too ill to attend an out-patient clinic. Some of the services have no doctor attached to them, and where there is one it is usually a GP with a special interest (GPWSI). This is not good enough; in a significant number of cases patients diagnosed as having ME have been subsequently diagnosed with another condition (eg cancer). Therefore consultants are needed. A particular problem is the lack of statistics relating to sufferers; no audit has ever been carried out. As to treatment, patients may receive a course of Cognitive Behavioural Therapy or similar for a limited period but after that they are just referred back to their GPs and there is no provision for review at a later date. reMEmber performs an important role by providing self management classes and keeping in regular contact with sufferers. There ought to be a national review of ME/CFS provision looking critically at the shortcomings of the present system and recommending major improvements. This would be very cost-effective in the long run. It is well recognised that early, accurate diagnosis and intervention leads to better outcomes.
3. Readiness of local NHS and Social Care services, and practical assistance offered to commissioners. As noted in paragraph 1 above, the community services are not yet prepared (having only recently been formed), and we fear they may not be ready for a long time because of the extensive work needed and limited resources. Voluntary organisations like reMEmber are very willing to offer help and expertise, but trying to fulfil this requirement is going to involve a very hard struggle.
4. Treating multi-morbidity and “the person not the condition”. We recognise the importance of this. ME/CFS can vary tremendously in its severity and there are often co-morbidities which are not picked up because the symptoms are thought to be “part of the ME”. There is scope for education of health care professionals here. reMEmber’s approach is to help patients identify their goals and action plans and find ways of achieving them using techniques such as stress management, problem solving, pacing, meditation, effective communication skills, and diet/healthy eating.
5. Obesity. We recognise this is a particular problem in conditions like diabetes and heart disease, but interestingly enough it is hardly ever found in ME patients. Mostly they lose weight, some of them drastically. In those conditions where obesity occurs the answer is nearly always education.
6. Examples of integration across health/social care and other services. We understand this is already happening in some areas. There is a need for providers of all services to get together with commissioners to address this subject. Integration should include the subject of state benefits such as employment support allowance (ESA) and personal independence payment (PIP). A large number of ME sufferers report benefits as their biggest problem, particularly the attitude of agencies such as Atos. Patients fear being declared fit for work when they are not with a consequent devastating loss of income. In Sussex reMEmber is working with the team set up by the CCG to enhance and improve integration.
7. Implications of an ageing population. There is no doubt that the numbers suffering from dementia, arthritis and other conditions associated with old age will increase, making things very tricky for commissioners and providers of services. There is no evidence that the number of ME/CFS sufferers increases with old age, but often there is misdiagnosis—for example the fatigue commonly experienced by elderly patients is mainly not ME/CFS, but may be diagnosed as such. Diagnosis by consultants can be the answer to such problems.
8. Interaction between mental health conditions and long term physical health conditions. For many conditions a clear distinction is not appropriate. A number of physical conditions produce a serious deterioration in mental health too. Also people who have been ill for a long time are quite likely to suffer from less striking mental health conditions such as depression or anxiety. This is unsurprising given that they may have lost their jobs, income, friends etc. A research study in 2012 found that children with ME/CFS suffered anxiety not as a result of their physical illness but because of being away from school, isolation, attitudes of family and friends etc. If we are to treat the “whole person” successfully, interaction between mental health experts and the other practitioners is necessary.
9. The extent to which patients are being offered personalised services. We understand this is happening in some areas, but these initiatives appear to be “one offs”. Machinery is needed to ensure that all appropriate services are brought together for each patient. Voluntary organisations can play a key part in this, as many already perform a co-ordinating role with the various services.
8 May 2013