Sussex ME/CFS Society

Kent Patients Survey 2005

Initial analysis
The research was conducted to gain data to aid our support and campaigning activities across the county of Kent. We distributed 304 questionnaires of which 186 were completed (61% response).

87% of respondents had a firm diagnosis of ME or CFS or PVFS from a GP or hospital doctor.

Most patients had been ill for over 10 years the average overall being 14.07yrs.

The majority were female - 77%.

2% were under 20 years of age, 30% between 21 and 40, 54% between 41 and 60 and 15% were over 60 years old.

13% described their present state of health as mild (able to do some work), 63% moderate (unable to work but able to get around most of the time), 22% severe (virtually housebound) and 2% were very severe (virtually bedbound).

79% described their GP as being reasonably helpful.

69% of respondents had seen a hospital doctor 51% of which were described as reasonably helpful.

76% of patients said they had adequate general information about the illness and how to manage it.

60% did not consider they received adequate general support from professionals.

68% had not experienced serious difficulty gaining their benefit entitlements.

The Sussex ME/CFS Society
(incorporating Kent ME Society)

Survey 2003

EXECUTIVE SUMMARY
25% of members had joined the society having heard of it through a national ME organisation, whereas only 7% had joined through NHS healthcare recommendations.

89% of members had joined to find out more information about ME/CFS with 60% of those also wanting to get support, access services and help support the society.

99% of members wanted to see a specialist clinic established in their home county. Of that 99% an average 84% felt that a specialist clinic should cover Diagnosis, Symptom control, Counselling, Management Strategy and Welfare Information.

52% members felt that their GP’s were reasonably knowledgeable and/or helpful with ME/CFS.

It was felt that from the results there is a definite need for a specialist NHS service (clinic) that was accessible to all and covered the points raised earlier.

Also identified was the need for more events such as house meetings and social gatherings throughout the counties and especially in some of the more inaccessible areas. Many would also like to see improved services for the severely affected.

It is felt that a personal one to one introduction to the organisation would be helpful. This would provide new members with information on symptom control, management, benefits and ME friendly professionals.

The need for improved information and training for health and social care professionals, particularly GP’s, was highlighted.

Funding will be required if the society is to extend its services to include a telephone information and counselling worker who specialises in dealing with ME/CFS sufferers.

Finally 83% felt that the society was generally meeting its aims of informing, supporting and representing those affected by ME/CFS and should further develop the existing services and introduce some new ones.

Copies of the full 23 page report and analysis are available from the Sussex & Kent ME/CFS Society

Chronic Fatigue Syndrome/ME in Sussex 2002 Survey

EXECUTIVE SUMMARY
ME is classified by the World Health Organisation as a disease of the nervous system (1). The recent Chief Medical Officers' Working Group Report (2002) recognises that CFS/ME "can cause profound and often prolonged illness and disability and can have a very substantial affect to the individual and family" (2).

Previous research conducted in 1999 in Sussex (3) identified the need for a local specialist ME/CFS clinic for the area, and estimated that there are at least 4,500 ME/CFS sufferers in Sussex, 900 people who are severely ill with ME/CFS and over 3,000 people who may be prevented from working due to the illness.

The Sussex ME/CFS Society has updated the research with this survey in 2002 to verify previous information and look at new areas of interest. Questionnaires were distributed to all 551members of the Society, and there were 277 responses (49%). The authors of this research wish to thank all members who took part in the survey.

In summary, the conclusions from this research are:

Diagnosis. There is still often a delay of between 12 to 18 months before a diagnosis of ME/CFS is made, as recently highlighted by Action for ME research.

Severity and Impact. 65% of the Sussex ME/CFS Society's current members are unable to work due to the severity of their illness.

Treatments. There was no single treatment that could be seen as a "cure-all" for ME/CFS! However, it was felt that the following statements could be made from research results:

Pacing appeared to be the most helpful treatment, as 88% found it helped and no one experienced it as being detrimental.

Alternative/Complementary Therapies. More people in this survey were helped by alternative therapies (59%) than antidepressants (53%) CBT (50%) or GET (37%). Only 4% felt their illness was worsened by an alternative therapy. Many commented positively on their experiences. However, a significant number had tried a range of different therapies at some financial cost to themselves.

Antidepressants also helped a majority (53%) of those who used them. But a significant number (42%) said antidepressants did not help them or made them worse. Many wrote about side effects and had tried a range of different drugs.

Cognitive Behaviour Therapy. 50% of those who tried CBT said it helped.

Graded Exercise Therapy. While some (37%) were helped by this therapy, more said it had not helped or had made them worse (48%). 12% of participants were not offered any of the four conventional treatments considered, despite some of these people categorising themselves as chronically and severely ill.

Patient Satisfaction. There was a relatively low satisfaction level regarding medical care, with only 6% very satisfied and 60% not satisfied. Satisfaction was qualified by comments on the positive attitude of the GP or Consultant involved and the quality of care provided.

Dissatisfaction was qualified by comments on the time taken to diagnose, the lack of knowledge about the illness, inadequate treatment and poor attitudes amongst the medical profession towards people with ME/CFS.

Below are some of the comments by Sussex ME/CFS Society Members made in their questionnaire responses and which appear within this report.

"My GP acted promptly and sensitively and made a quick referral"

"I am quite satisfied but (I have been) basically left to cope as there seems to be no treatment available"

"I found (the treatment) extremely helpful and although I am not recovered I use the practical strategies everyday to organise my time and activity"

"I feel that too many people like myself do not receive early intervention so by the time they do see someone the illness is chronic and much harder to tackle. By then people have usually compounded difficulties, and financial, social, and emotional losses."

"I do feel that everyone's needs are different with this illness and the NHS tends to think that all people will react in the same way to treatment."

"Up to 1999 my many requests for help were ignored - it was "all in my mind", just stress, or I was told there was no such thing as ME."

"I cannot praise the treatment I have received or the results highly enough. I am now 90% recovered and have absolute faith in ….. as a treatment for ME."

The Sussex ME/CFS Society believes that this report further indicates the need for a local specialist service for ME/CFS in Sussex, and that action is needed by all agencies to ensure that this need is met in the near future.

Notes:

(1) World Health Organisation Report 1992
(2) Chief Medical Officers' Working Group Report on ME/CFS - A Guide 2002 page 5
(3) ME/CFS sufferers in Sussex: Their needs and experiences of local care provision. Edwards et al. 1999

Full report available from Sussex & Kent ME/CFS Society

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 80's

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.

FULL 20 PAGE REPORT AVAILABLE FROM SUSSEX ME/CFS @ £4.00