Chronic Fatigue Syndrome/ME Sufferers in Sussex: Their Needs and Experiences of Local Healthcare Provision

REPORT, FEBUARY 1999 – EXECUTIVE SUMMARY

The research was conducted in response to the Chief Medical Officer recognising Chronic Fatigue Syndrome/ME (CFS/ME).

CFS/ME is classified by the World Health Organisation (1992) as a disease of the nervous system, and the Department of Health recognises it as a ‘debilitating and distressing condition’ (DoH 1998).

From the research it is estimated that in Sussex there are:

  • At least 4,500 CFS/ME sufferers
  • 900 CFS/ME sufferers who are severely ill
  • Over 3,000 people who may be prevented from working due to CFS/ME
  • At least 1,500 chronic or severe sufferers in Sussex requiring the initial ‘minimal service’ level as defined by the National Task Force (1998)

The profile of respondents from Sussex ME Society reveals that:

  • Most respondents had been ill for three or more years and were in a chronic phase of illness
  • Respondents were either mildly ill and able to do some work (26%), moderately ill and unable to work (37%), or severely ill and either housebound or bed-bound 23%). 14% moved between these categories
  • The age of respondents ranged from school children to the retired, the oldest being in their 80s

The National Task Force Report (1998) acknowledges that the General Practitioners (GPs’) role in working with CFS/ME patients should include early assessment, diagnosis, continuity of care, as well as acting as gatekeepers to further health care services. In addition ,the NTF recommend that GPs’ also provide effective treatment and care management.

The research indicated the following regarding the use of GP services and their possible effectiveness according to respondents:

About 64% of people saw their GP once a year or more, with about 39% seeing their GP at least three times a year.
While a majority (54%) considered their GP to be knowledgeable about CFS/ME, a significant number (40%) did not. 10% thought their GP was helpful but not particularly knowledgeable

The research revealed the following regarding the use and potential effectiveness of Hospital Consultant services in and outside Sussex, according to respondents:

  • 55% had seen a Hospital Consultant
  • 40% of these had regular appointments
  • 23% of people had not seen a consultant and nearly all would like to have done so
  • About 32% of people had been to St. Bartholomews Hospital in London, and a further 21% had seen one particular Hospital Consultant in Haywards Heath
  • Most people (85%) had seen consultants working within the NHS
  • 56% of people had to travel outside Sussex to see a Hospital Consultant
  • Of these people, 65% were badly affected by the journey. For some this exacerbated their illness,while for others it prevented them from taking further advantage of such services.

The National Task Force (1998) suggested that CFS/ME may be costing the nation as much
as 1,000 million pounds every year.

This research demonstrates the costs of CFS/ME to society as well as the medical and personal costs to the sufferer and their carers. The personal costs of CFS/ME included emotional and financial aspects, and those were particularly demonstrated through the case
of studies.

NEEDS IDENTIFIED

The research indicated a need for improved services for CFS/ME sufferers in Sussex. 85% of GP’s wanted to see improved service provision for CFS/ME locally.

There was unanimous support for a local CFS/ME specialist clinic. Some members and GP’s identified a range of services that they thought a local clinic should provide. Such a clinic could meet some of the needs identified below.

There is a need for increased awareness of CFS/ME as there is still generally a lack of knowledge and understanding about the illness.

CFS/ME sufferers and their carers need to have access to the right level of advice, support and information to help them cope with the illness.

There is a need for GPs to recognise the illness at an early stage in order to make an accurate assessment and early diagnosis.

Those suffering from CFS/ME need to receive effective treatment and have access to a range of appropriate services. GPs need to be willing and able to refer CFS/ME patients to other services.

There is a need for sufferers to have their care effectively managed. Any carer involved would also receive a benefit from this. In some cases it may be appropriate for a CFS/ME consultant to take on this task.

Those CFS/ME sufferers who are moderately or severely ill need to have access to a consultant specialising in the illness. Such a specialist should be local and therefore accessible to those too ill to travel far.

There is a need for consistency in service provision for all people with CFS/ME across Sussex. Furthermore, local Health Authorities have a duty to provide a service to people with CFS/ME, which is equal to services for other neurological illnesses.

RECOMMENDATIONS

  • Further research need to be undertaken to assess the feasibility of a local clinic to outline the form that such clinic could take in Sussex and from this a proposal for a Sussex CFS/ME clinic should be produced.
  • As a precursor to a local clinic, a designated consultant or GP with a specific interest in CFS/ME should be appointed in Sussex.
  • This research should be taken into account in the preparation of guidelines for Sussex GPs on working with CFS/ME patients.
  • Improved training and information for health and social care professionals, particularly GPs, is needed.
    SUSSEX ME/CFS Association should continue to develop advice, support and information services.
  • Local services need to continue to develop ways to support carers of people with CFS/ME.

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