AYME welcomes the guidelines on diagnosis and management of ME/CFS by the National Institute for Health and Clinical Excellence (NICE) as a powerful tool in the battle for positive and effective services for children and young people.
It is estimated that only one in ten children in England currently receives treatment for ME/CFS. We believe the NICE guidelines now put the onus on Primary Care Trusts to provide quality services to patients, administered by professionals with experience of ME/CFS.
The guidelines are a consensus document drawn together by 18 ME/CFS professionals and four patient representatives. AYME paediatric medical adviser Dr Esther Crawley and AYME founder Jill Moss were part of the working group. An initial draft guideline was issued to more than 150 ME/CFS organisations in September 2006, with their feedback informing the final version of the guidelines that were published last month.
AYME’s Chief Executive Officer Mary-Jane Willows said: “Although we welcome the guidelines as a great leap forward for people with ME/CFS, there are two main drawbacks: The guidelines are a consensus document which means that they will not suit all of the people all of the time; and there is a serious lack of evidence-based recommendations due to the lack of research undertaken on children. However, the guidelines will give patients and patient organisations an effective tool to challenge Primary Care Trusts (PCTs) about their services for people with ME/CFS. Many PCTs have shirked their responsibilities to people with ME/CFS for too long and I am pleased to see that NICE has taken account of much of the patient evidence supplied during the public consultation period.”
The NICE guidelines also lack detail on the care and management of the most severely affected patients, but it is hoped that new evidence to further inform their care will emerge through work undertaken by the existing specialist services over the next four years, in time for the review of the guidelines.
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‘A child or young person who has symptoms suggestive of CFS/ME should be referred to a paediatrician for assessment to exclude other diagnoses within 6 weeks of presentation’. (page 6)1.2.2.2; A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for 3 months in a child or young person; (4 months in an adult) 1.3.1.1 ‘the diagnosis should be made or confirmed by a paediatrician’. (page 4) 1.3.1.1; ‘Engagement with the family is particularly important for children and young people, and people with severe ME’. (page 4)1.1.2.1
These statements add weight to AYME’s fight for early, effective diagnosis for children and young people. Evidence points to the fact that early diagnosis has a positive impact on prognosis (ME Diagnosis: Delay Harms Health – A report from the ME Alliance, April 2005 available from info@ayme.org.uk)
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The prognosis section 1.3.1.2 (page 10) advises ‘cautious optimism’ stating that ‘most people will improve over time’ but are realistic in stating that ‘others will continue to experience symptoms or relapse and some people with CFS/ME may remain housebound’.
This reflects AYME’s position on the condition, but can only be the case once every child, young person and adult receives the prompt care and early management needed.
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‘Healthcare professionals responsible for caring for people with CFS/ME should have appropriate skills and expertise in the condition’. (page 10) 1.1.3.1 ‘Primary healthcare professionals should be familiar with and be able to identify the characteristic features of CFS/ME’. 1.2.1.1 Healthcare professionals should be aware that symptoms of CFS/ME fluctuate in severity and may change in nature over time’. 1.2.1.3 ‘Advice on symptom management should not be delayed until a diagnosis is established’. 1.2.3.1
These are very positive and supportive statements but they rely heavily on primary care teams receiving appropriate training in managing ME/CFS symptoms. AYME will continue its work with the specialist services and inform their training through the experiences of our members, their parents and carers. The position currently is that the majority of children and young people do not have access to trained healthcare professionals.
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The guidelines, where followed, should ensure the patient remains at the centre of their care. Throughout the document it emphasises patients working in partnership with clinicians (page 3), having an individualised person centred programme (page 5)1.6.2.1 taking into account patients’ individual needs and preferences, 1.6.2.3 and recognising that the person with CFS/ME is in charge of the overall management plan (page 9).
The guidelines underline that ME/CFS is a very individual condition which will affect every patient in different ways and that one model of management will not suit everybody. The role of AYME and it’s parents, carers and members is to take every opportunity to spread this positive message amongst all professionals in health, education and social services to finally put an end to the abuse families and young people have endured in the past and end the disparity in services. In 2007 ME/CFS services are still a postcode lottery.
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The guidelines recommend assigning a ‘named health care professional’ to the patient – this is especially important for the severely affected (page 9)1.1.2.1 and 1.9.1.3
To date there have been far too many cases where care has been poorly managed without a named clinician taking responsibility for co-ordinating the care plan. In every crisis case AYME has been involved in this has been a fundamental flaw.
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Chapter 7 (page 303) is dedicated to the care and management of the severely affected and it is acknowledged that ‘in the past, this group of patients have either received healthcare that is inappropriate and even harmful, or been unable to access healthcare services…reports of people with severe CFS/ME not seeing medical practitioners for many years’. 1.9 (pages 3 &10) provide key principles for the care of patients with severe ME. Here they acknowledge the complex nature of ME/CFS stating that ‘Management of severe CFS/ME is difficult and complex and healthcare professionals should recognise that specialist expertise is needed when planning and providing care for people with severe CFS/ME'. (page 3)1.9.1.1 They make it clear that 'people with severe CFS/ME may need to use community services' which prior to the publication of the guidelines have been inaccessible to many severely affected patients. 1.9.1.3 and they recognise that patients should be 'offered a summary record of consultations because of their cognitive difficulties’ (page 10) 1.9.1.4 the provision of ‘domiciliary services (including specialist assessment)’ is also included 1.1.1.5.
At present this is little more than a dream for many of AYME’s severely affected members (SAM’s) and what is clear is that more specialists are urgently needed. Training for professionals is urgently required in the management of severe ME/CFS. AYME will continue to work in partnership with the NHS to ensure that member’s experiences are reflected and shared in case studies, training and whenever there is development of domiciliary care. This is the only way services can begin to meet the needs of our SAM’s many of whom don’t even have the benefit of a regular GP visit.
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The section on strategies that should not be used (page 13) 1.4.6 is comprehensive. It includes clear statements that clinicians should not advise patients ‘to undertake unsupervised vigorous exercise (such as simply go to the gym or ‘exercise more’) because this may worsen symptoms’ and specialist management programmes should not be ‘delivered by practitioners with no experience in the condition.’
Strategies referred to in 1.4.6.3 are those not supported by the guidelines as ‘there have been no controlled trial evidence of benefit’. However some patient groups do report benefit from several of these alternative therapies. (Severly Neglected, Action for ME Member’s Survey: March 2002)
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The guidelines give weight to personal preference. ‘People have the right to refuse or withdraw from any component of their care plan without affecting future care’ (page 9) 1.1.1.3.
Young patients and their parents can use this statement when they feel threatened and under pressure to participate in management programmes that differ from their beliefs. If members don’t like the treatment being offered, the guidelines support them in saying so. AYME will continue to fight for its member’s rights to choice of treatment and care.
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The guidelines set a realistic picture of what activities and long term goals should be like for someone with severe ME e.g. ‘sitting up in bed or brushing hair’ being an example of a long-term goal (page19) 1.6.2.15. This section also includes a realistic note on what recovery times might be.
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The guidelines recommend that transitional care from paediatric to adult care is ‘planned and managed’ (page 5)
The guidelines highlight the very important issue of managing transitional care. The AYME telephone helpline is frequently told of members who are abandoned once they reach 16 years of age. They are discharged from paediatric care and are not transferred to an appropriate adult service; instead they are left without treatment, support or care. This is not the case where specialist services exist but there are only 9 in England and little or no services at all in most regions of Scotland, Wales and Northern Ireland.
AYME will use the guidelines to empower our members, their parents and carers to fight for improved access to specialist treatment across the UK.
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Relapses: ‘It may be necessary to reduce or even stop some activities’ (page 15) 1.7.2
This statement reinforces the whole concept of patients having control over their own management programme without worry or pressure but still having the guidance of understanding professionals. It is vital that the knowledge and experience of the few specialist paediatricians and consultants is disseminated throughout the NHS with ME/CFS being included in GP training.
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Education: children and young people will be supported to return to education ‘when they are ready and fit enough’ (page 12) 1.4.5.2 with ‘gradual reintegration into education’ and ‘time in education should not be used as a sole marker as progress of CFS/ME’ (page 13) 1.4.5.6
These are significant statements as many of AYME’s current crisis cases, involve veiled threats of child care proceedings and are triggered by misinformed education professionals. This adds weight to AYME’s case that health, not education, should not be seen as a priority for our members. AYME will continue to take every opportunity to speak at conferences, run workshops and distribute essential information to health, social services and education professionals.
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The guidelines acknowledge that moderately to severely affected members may need to use wheelchairs and be provided with blue disabled parking badges 1.4.4.1 (page 12).
At present ME/CFS patients have had to fight for this right and have all too often been denied these services, they will now be able to quote the guidelines providing them with a stronger argument.
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For most patient groups the most contentious area of the guidelines are the two therapies to be ‘offered’, namely cognitive behaviour therapy (CBT) and graded excersise therapy (GET). The guidelines make it clear that the therapies offered are ‘the interventions for which there is the clearest research based evidence’. 1.6.2.4 and that CBT and GET should be offered to those mild to moderately affected 'who choose these approaches’ (page 5) 1.6.2.4 It is crucial to note that CBT and GET are only to be offered to (not forced upon) those who are interested and only to those who are mild to moderately affected.
AYME understands this to mean that patients will not be forced to do CBT or GET against their will. Naturally there is concern that the wording “offered to” may be misinterpreted by assertive professionals, and that patients may continue to feel coerced into participating in a therapy (GET) which has in the past been reported by patients as being harmful (Severly Neglected, Action for ME, Membership Survey March 2002) AYME acknowledges these past difficulties and empathises with patients who are unhappy with these therapies. However, in our experience, the primary significance of any treatment programme is that the therapist delivering the treatment understands, is knowledgeable about and is trained in ME/CFS, this is reinforced in the Guidelines 1.6.2.8 and 1.6.2.11. AYME’s preferred management programme for children and young people is Activity Management 1.6.2.22, offered by a multi-disciplinary team experienced in ME/CFS which would include elements of CBT, for patients who experience high levels of anxiety.
