Health CommitteeWritten evidence from the ME Trust (LTC 97)

CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS CFS/ME

CFS/ME is a disease of unknown origin. It affects an estimated 0.2–2.0% of the population.

Diagnosis can take years—and misdiagnosis is common.

People with CFS/ME fall through the existing care nets.

The severely affected are particularly misunderstood, unsupported and even neglected.

If fortunate to have the correct care, a significant proportion improve or recover—even after very long term severe illness.

Lack of NHS Commissioning and NICE guidelines can prevent patients receiving funding for appropriate care.

1. The World Health Organisation (WHO) classifies M.E. as a neurological disease and lists it as an alternative term for post viral fatigue syndrome. CFS is a condition that causes long-term fatigue and other symptoms which are not caused by any other known medical condition. Symptoms can vary and until there are improvements in diagnosis the umbrella term CFS/ME, which was suggested by the Working Group to the Chief Medical Officer, is generally used.

2. National Institute for Health and Clinical Excellence (NICE) defines CFS/ME as a condition where healthy individuals experience severe fatigue following mental or physical activity, and can be triggered by an infection.

3. CFS/ME is a disease of unknown origin with a wide spectrum of symptoms and severity. Studies show it may affect an estimated 0.2–2.0% of the population but there is a lack of epidemiological data in the UK, so numbers are uncertain.The most severely affected can be bed-bound and in pain for years. There is no scientific medical cure. The physical symptoms may ruin lives and can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

4. Patients able to access the very limited NHS specialist services have been ill on average for three—four years before being diagnosed and are unwell for an average of 6.3 years.1

5. People referred to the limited NHS specialist services are considered to be the “tip of an iceberg” as the majority of the severely affected, the bed-bound or house-bound, are unable to access these services and are therefore generally excluded from data.

Dr Mike Cheshire, Vice President of the Royal College of Physicians 2007–10, candidly states: “Sadly CFS/ME does tend to fall through the net, with many patients receiving neither the diagnosis, support nor the information they need. It is difficult to diagnose, many doctors still doubt that it exists and therefore failure to recognise it is common.”

Although cost effective help could be provided for patients with CFS/ME, the Government’s Chief Medical Officer’s report,2 NICE guidance3 and parliamentary enquiry4 all suggest that few patients have access to appropriate care and support. The CMO report, NICE, parliamentary enquiry, and numerous patient surveys, highlight the urgent and unmet needs of the severely affected.

6. NICE guidelines state the severely affected should be referred immediately to a specialist. Few receive such a referral/support. Provision of specialist services in this country is almost non-existent and there is scant provision for home visits or support for the bed-bound or house-bound. CFS/ME is typically excluded from private health insurance (PHI).

7. ME Trust Chair of Trustees, Hannah Clifton, had ME for 12 years and fell through the care net. She recovered completely after finally accessing inter-disciplinary care tailored to her individual needs by Burrswood Hospital, a Charity and independent hospital in Kent.

Hannah is a former City of London Solicitor. She spent most of the 12 years of her illness bedbound and in pain. Throughout those years, she was told by a succession of GPs that no hospital bed was available for her on the NHS. She was given only 13 weeks of social services support and no other specialist help or support at home. Her “probable” diagnosis of CFS/ME was confirmed after years of illness. In May 2008, her GP’s prognosis was that she “probably would not get better.” That month she travelled bedbound in a campervan to Burrswood. Four weeks later she was walking and pain free.

In June 2011, Hannah Clifton founded the M.E. Trust. The vision of the Trust is that all people with CFS/ME have access to the best resources for diagnosis, treatment and care to enable early and full recovery. That year, Burrswood Hospital also appointed her as a Volunteer Patient Liaison on CFS/ME to the Hospital.

Hannah has been privileged to meet with numerous patients with CFS/ME at Burrswood Hospital including the following:

A lady from the North of England who arrived by campervan in Spring 2012, ill for four years and wheelchair bound. She had raised funds through family and friends for a three week stay. The Trust funded a fourth week. She began walking again on that 4^th week and is back at work part time.

A person from the West Country, 18 years bed-bound, who travelled to the hospital for 7.5 hours on a mattress in a hire care. She began walking on the fifth week of her stay and has just holidayed in the Canaries.

A patient from the North of England, severely affected for 23 years, now walking again after the hospital discovered she in fact had Lyme disease.

A lady from the East of England who spent 18 months in a pitch black room bedbound with severe neurological damage. On the fifth week of her stay, she began to walk again and could enjoy daylight. She is now able to sit for 7 hours and goes out shopping unaided.

A two year study by Kent University on CFS/ME care at Burrswood Hospital has very encouraging mid-term results.5 The final report is expected to be published in September 2013.

8. The M.E. Trust is working in association with Burrswood Hospital to bring the highest standard of specialist care to all with CFS/ME as part of our vision to transform the lives of people with the illness. We aim to support a Centre of Excellence at Burrswood—the first specialist centre of its kind in the UK. We very much hope Burrswood Hospital will be a referral centre for, and to work with, the NHS. Our ambition is that Burrswood Hospital will be a model for the provision of CFS/ME in-patient care nationally with the intention of developing another centre, possibly in the North of England.

Our Patron, Dr Mike Cheshire states: “CFS/ME is difficult to diagnose, and difficult for the doctor and the patient to manage. Burrswood Hospital will provide the opportunity to confirm the diagnosis and have treatment tailored to the patient’s individual needs”.

Patients are often excluded from obtaining the life transforming care that is needed due to lack of understanding and of funding. It is not unusual for patients to have waited 10 years or more for much needed specialist care before finally hearing about Burrswood, They often lack the means to pay and NHS Commissioners often refuse to make a referral. Patients who are able to fund stays at Burrswood Hospital use a mixture of private means [family and friends donations] or benefit from charitable funds provided by Burrswood. Most patients are not in a position to raise funds for other than a short term respite stay. Hannah paid for her stay—originally three weeks, but extended by agreement with the care team at Burrswood Hospital, to three months, using the sale proceeds of her home, as her PCT declined to reimburse the cost. NHS referrals to Burrswood Hospital do occur but are not common.

The cost of an inpatient stay at Burrswood Hospital compares favourably with NHS rates. Burrswood charges approximately £300 per night for a single en-suite bedroom including all food, medical visits, treatment, nursing and clinical care, compared with a cost of £250–300 for a hospital bed in an NHS Hospital.

9. Burrswood Hospital is a 40 bed independent hospital. It offers adults the highest levels of evidence based interdisciplinary clinical and compassionate nursing care to ensure that patients achieve the best possible outcomes. In-patient medical care is provided by an experienced resident medical team who are available 24 hours a day. Senior Physician Dr Paul Worthley has 20 years’ experience of helping people with the illness—extraordinarily rich expertise in a field not taught in medical schools. Skilled nursing care, counselling, physiotherapy, input from chaplains and support staff are all available.

At all times Burrswood Hospital’s individually tailored approach ensures that each patient’s own specific needs and requirements are met. The available physical and psychological energy levels of each individual patient determine the programme of each person’s stay. Lengths of therapeutic sessions are paced, as appropriate, in agreement with the patient. Rooms are specially furnished and fitted out so as to address the noise and light sensitive concerns of CFS/ME patients, and the whole Hospital service provides an appropriate setting to improve recovery.

10. Dr Cheshire adds: “CFS/ME is difficult to diagnose, and difficult for the doctor and the patient to manage. The Centre at Burrswood will provide the opportunity to confirm the diagnosis and have treatment tailored to the patient’s individual needs.”6

11. Burrswood cannot provide a medical cure for CFS/ME—there is none, but it can provide desperately lacking “whole-person” individually tailored patient care. Many who receive that care are able to manage their illness better, report significant improvement in symptoms and recover to lead full lives again—despite years of long term severe illness. We are passionate that this pioneering care be available to all who need it. People falling though the existing care net in this country, and not receiving support in accordance with NICE guidance, could be receiving the help and support they needed if funding support was made available.

12. Patrick Luyten UCL Senior Lecturer; Asst Prof Leuven University says:

“There is a desperate lack of provision for people with CFS/ME both in this country and worldwide. This landmark Centre promises to provide ground patient–centred specialist care, and could be at the vanguard of much needed change internationally”.

6 June 2013