Over 30% Of Primary Care Trusts In The UK Don’t Properly Provide For Chronic Fatigue Sufferers

In England more than one third of Primary Care Trusts (PCTs) either don’t commission specialist services for M.E. /CFS patients or cannot confirm they do. In Scotland, Wales and Northern Ireland provision is far worse.


Action for M.E., the UK’s leading charity for people with Myalgic Encephalomyelitis (M.E.), produced a damning report, Ignorance, injustice and neglect, about NHS specialist services for people with M.E but admits little has been done about improving situations.


The report was based on the results of Freedom of Information Act requests to all Primary Care Trusts (PCTs) in England, Health Boards in Scotland and Wales and Health and Social Care Boards in Northern Ireland and crucially uses the NHS’s own statistics to expose failings.


M.E., also known as Chronicle Fatigue Syndrome (CFS), is a chronic, fluctuating neurological illness affecting, to varying degrees, an estimated 250,000 in the UK.


Less than a quarter of PCTs commission specialist care in the home for those M.E. patients who are too disabled to travel.


Only 10 per cent of PCTs could provide information on the numbers of children with M.E. that are treated in their patient population.


National standards and clinical guidelines are being ignored.


Action for M.E. Chief Executive, Sir Peter Spencer, said: “These figures are a disgraceful indictment of institutionalised discrimination and neglect. Health Services in all of the four home nations are still not even beginning to address the needs of this vulnerable patient group properly.


“Rhetoric and prevarication from Ministers is simply not good enough. We need action now to put this right once and for all.”


As part of its Time for Action campaign, Action for M.E. is demanding the following:


In England, the Secretary of State for Health should take responsibility for ensuring that the care commissioning process in the UK is done properly for M.E. /CFS specialist services.


As local commissioning has so evidently failed this patient group, special arrangements should be made by the new NHS Commissioning Board. The outcomes of these arrangements should be periodically audited to check compliance.


In Scotland and Wales, Governments should provide ring fenced additional start-up funding immediately to implement the national plans they have already drawn up and make proper provision for full scale services as soon as possible.


The Northern Ireland Government should accept this report as another wake up call to engage with the patient groups and clinicians as a matter of greater urgency.


At the local level, members of national Parliaments and Assemblies, together with elected representatives in local Government should examine the information provided from their areas and hold to account those organisations that are failing their M.E./CFS patients so badly.


1. Action for M.E. (www.actionforme.org.uk) is the UK’s leading charity working to improve the lives of people with M.E. It provides information and support to people affected by M.E. and their carers and campaigns for more research, better treatments and better services for them. It offers telephone support line, welfare rights line and a range of helpful booklets and leaflets.


2. Myalgic Encephalomyelitis (M.E.) is a chronic fluctuating condition, also known as Chronic Fatigue Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS). It affects 250,000 adults and children in the UK.


Common symptoms include muscle pain, persistent exhaustion, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or Irritable Bowel Syndrome.


The National Institute of Health and Clinical Excellence (NICE) recognises that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

3. What this investigation has revealed is:


Widespread ignorance on the part of commissioners who in so many areas don’t even know what the patient needs are.

Injustice towards patients who are the innocent victims of a very pronounced post code lottery effect across England

Neglect particularly of severely affected patients who in the main do not receive any Domiciliary Secondary Care service from the NHS; and neglect of children who are not getting the early diagnosis and early referrals as set out by National Institute for Health and Clinical Excellence (NICE).


NICE gives all 151 PCTs in England explicit guidance on when children and adults should be referred to specialist clinics. Yet more than a quarter of the trusts that responded admitted that they did not commission specialist secondary care.


Only 15 PCTs, less than a third of those that responded to this question, said they provided designated M.E. /CFS care pathway for their area. NICE recommend clear care pathways for this patient group.


Nine of the 14 Scottish Health Boards replied to this question and of these, only two were able to supply care pathways. The Welsh boards that responded said they did not have care pathways.


The Northern Ireland Health and Social Care Board said it was ‘working towards’ adopting NICE guidelines in relation to care pathways.


Many people with M.E. /CFS are unable to leave their home because of their condition, with up to 25 per cent of patients who have the most severe forms of the condition likely to be confined to bed by their M.E. /CFS for months or even years on end. Yet only 37 out of 151 PCTs said they provided domiciliary care (i.e. home visits) and, of these, only 12 were able to provide statistics on how many people with M.E. /CFS had been seen in their home during a year.


Only one Scottish, one Welsh and one Northern Ireland board said they provided home visits for people with M.E. /CFS.


Only 53 PCTs, one Scottish Health Board and four Welsh Health Boards were able to provide funding details. Funding per person with M.E/CFS varied widely and ranged from £0 to £382.


The need for early diagnosis, especially for children, with referral to specialist services if necessary is stated in the NICE Guideline for M.E. /CFS. However, only 16 of the 151 English PCTs and one of the 14 Scottish Health Boards were able to provide separate details of how many children they had referred to specialist M.E. /CFS services.


The results of our inquiries have confirmed what many people with M.E. /CFS and their carers already know: that NHS services for the 250,000 men, women and children in the UK are at best patchy and, at worst, non-existent.