Introduction
The Norfolk and Suffolk Patient /Carer Group welcome the rewritten NICE Guidelines (NG206) for people with M.E. and CFS (Myalgic encephalomyelitis and chronic fatigue syndrome) which have finally been released today, 29 October 2021. These are the Guidelines that should have been issued in 2007.
The significant shortcomings of the 2007 Guidelines were apparent from the time that they were released. Of significant concern is the widespread reports of harm following Graded Exercise Therapy (GET).
Work of the Norfolk and Suffolk Patient / Carer group
For many years the Patient / Carer Group has been working with the NHS in Norfolk and Suffolk to address the inadequacies and inequalities in care evident in our local therapy-led M.E. and CFS Service.
In 2009 the NHS acknowledged these inadequacies and inequalities. (links to documents can be opened in Chrome) The NHS committed to working with patients and carers to address the shortcomings in the service.
A great deal of work has been undertaken including;
Our 2009 Patient Survey (prior to this M.E. & CFS patients had not been asked what they wanted from their service)
A full Needs Assessment, the first in the UK, commissioned by the NHS in Norfolk in 2012/13
A revised Service Specification which was signed off on 2013
A report: "Feasibility Assessment of the Implementation of a ME & CFS Consultant Led Service" (2016)
The establishment of a clinically led Specialist M.E. Service in Suffolk during 2018/19. This was highly regarded by patients, but unfortunately had to be suspended due to staffing constraints
Monitoring of outcomes for patients following contact with the current M.E. and CFS Service
There has been full agreement between the Patient / Carer Group and Suffolk Clinical Commissioning Groups (CCG's) regarding the changes that are required to improve care for people with M.E. and CFS in our area. Numerous meetings have been held with representatives from Norfolk and Suffolk CCG's and the provider of the service, East Coast Community Health.
The longstanding concerns regarding the M.E. & CFS Service have also been repeatedly reviewed by the Norfolk & Suffolk Health Overview and Scrutiny Committee (HOSC). The Norfolk and Suffolk HOSC have made detailed recommendations for service improvement which have been supported by the Patient / Carer Group.
Resistance to change
Unfortunately there has been considerable resistance to the changes required to deliver an adequate and equitable service. This resistance has come in recent years from the Norfolk & Waveney CCG's, and the current provider of the Service - East Coast Community Health (ECCH), which is based in Waveney.
There appears to be a deep-seated objection to the development of the Service towards a model that is acceptable to patients and as recommended by the Norfolk and Suffolk HOSC. This has been despite a climate in healthcare which is moving increasingly towards co-production of services and patient-led change. The NICE Guideline Committee has reflected this by including five lay members representing patient groups. Initiatives by the Provider, ECCH, such as "Patients as Teachers" have failed to follow through with changes recommended by service users.
In addition there have been significant changes made by ECCH to the contracted service specification. This has led to a reduction of service levels, increasing inequalities of care, and reducing support for patients and their carers
The Covid pandemic and structural changes within the NHS has also delayed progress.
Rewritten NICE Guidelines
The release of the rewritten NICE Guidelines today is an unprecedented opportunity to raise awareness regarding the devastating impact that M.E. and CFS has on the lives of patients and carers, and the paucity of care provided in Norfolk and Suffolk.
The rewritten NICE Guidelines reflect the main changes that we have been asking the NHS to implement for over 10 years. This involves delivering holistic, clinically led (not therapy led), multidisciplinary care including:
Medical assessment, diagnosis and care for people of all ages and all levels of severity and complexity:
Self-management strategies, including energy management
Symptom management including prescribing and medicines management
Domiciliary care for the severely affected
Managing coexisting conditions, and ensure appropriate referrals to other specialist services
Regular monitoring and review especially when symptoms are worsening, changing or severe
Diet and nutritional expertise
Support
To maintain independence
To access to aids and equipment
To access social care services
To engage in work, education, social activities and hobbies
Psychological, emotional and social well-being
For financial independence, including benefit claims
For families and carers
Shaped by
Developing personalised care and support plans which are regularly updated
The principles of shared decision making, especially explaining the risks and benefits of each intervention
Early involvement of M.E. Specialist services in safeguarding assessments
Training and awareness for Healthcare Professionals, especially GP's and paediatricians
Identifying and removing barriers to accessing care
Co-production of service development with patients and carers
No Graded Exercise Therapy or Lightning Process, CBT for coping strategies only
Conclusion
The Patient / Carer Group is continuing to work with the NHS and the Norfolk and Suffolk HOSC to secure a service which better meets the needs of local patients, and which will now be underpinned by the rewritten NICE Guidance. Although there is no treatment for M.E. or CFS, management, care and support can be delivered to improve quality of life and function. We are hopeful that progress can finally be made to address the long-standing significant inequalities of care in our region which were identified by the NHS back in 2009.
Norfolk and Suffolk M.E. & CFS Patient / Carer Group
29th October 2021
***************
Quotes
NICE chief executive professor Gillian Leng stated NICE is:
"now confident that the guideline can be effectively implemented across the system"
Mrs Caroline Kingdon, Research Fellow, Research Nurse and UK ME/CFS Biobank Lead, London School of Hygiene & Tropical Medicine, said:
“The new NICE guideline will positively influence the future diagnosis and treatment of people with ME/CFS in the UK and beyond. It aims to improve the understanding and awareness of the disease and when to suspect it, so that people are diagnosed earlier and receive better care and symptom management.
Importantly, the guideline recognises that ME/CFS can cause profound, long-term illness and disability, and that people with ME/CFS may have experienced prejudice, disbelief and stigma.
While treatments that could cause further harm to people with ME/CFS have been removed, CBT continues to be recommended as an adjunct therapy – as in any chronic illness. Those profoundly affected by ME/CFS and their carers will welcome the emphasis on the provision of individualised care by a multidisciplinary team.
The guideline promises to treat people with ME/CFS with compassion, ensuring that the care they receive is safe and of the highest standard, and is delivered appropriately according to the needs of the individual.”
Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London, said:
"I think the committee have reached an admirable synthesis in a very difficult situation. There is a need to preserve and extend specialist facilities for people with ME/CFS, making use of the experience of dedicated health care professionals, but there is also a need for a clean break with treatment protocols not supported by evidence and based on discredited theory.
If future training of health care professionals genuinely follows the spirit of the guideline then a lot may be achieved. The break from theory-driven care needs to be real, however, not simply replacing a discredited theory such as deconditioning with another equally ununsupported."
Science for M.E.
"We believe the guideline provides a detailed blueprint for the provision of more respectful and supportive care of people with ME/CFS, even though there are currently no treatments for the disease itself.
But it will take a concerted effort to implement it. Better training and awareness should see an end to inappropriate assessments under mental health legislation and child safeguarding proceedings.
We hope that clinical commissioning groups will review this guideline carefully and work with patient representative organisations to provide better, guideline-compliant medical services for people with ME/CFS, who have been poorly served for so long."
Forward-M.E. (M.E. Charities and Voluntary organisations)
"Forward-ME welcome the new NICE Clinical Guideline and hope it will lead to improved healthcare provision and better relations between healthcare professionals and people with ME.
There is still a long way to go before we truly understand what causes and perpetuates this neurological condition, and we encourage researchers and funding bodies to prioritise investigations particularly in those areas highlighted by the guideline’s research recommendations.
The key message the guideline carries is that ME is a medical condition that requires a biomedical approach. It is not a biopsychosocial (BPS) condition. We hope that the new guideline will signal a change in some attitudes, just as there has been for diseases such as epilepsy, MS, diabetes, and Parkinson’s in the past.
We hope that with this new guideline health and social care professionals, clinical commissioners, charities, and people with ME will all work together to improve healthcare provision and make our incredible NHS accessible to all."
**************
Further information
Journalists covering ME/CFS: Don’t ask about the new NICE guideline, ask about the old one. Why these guidelines are so different from the old ones Brian Hughes
Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys, Geraghty et al (2017)
https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
3. The new NICE guidelines for M.E./CFS: Ten Questions Answered Brian Hughes 15 August 2021: https://thesciencebit.net/2021/08/15/the-new-nice-guideline-for-me-cfs-ten-questions-answe
4. Panorama : Sick and Tired (Treating children with M.E. and CFS)
https://drive.google.com/file/d/1AHzPSnPUc-WFWc6Y9CcWVB0Ny26TU448/view?usp=drivesdk
Local Information
Inequalities of care identified by the NHS in 2009
Suffolk and Norfolk Joint Health Overview and Scrutiny Committee minutes November 2009 - deep concern in the extremely long delay in providing adequate M.E. & CFS Services
Norfolk and Suffolk M.E. & CFS Patient / Carer Group 2009 Patient Survey
http://nandsme.blogspot.com/p/patient-survey.html?m=1
Full Public Health Needs Assessment for M.E. and CFS Services in Norfolk and Suffolk (2013)
Feasibility assessment of the implementation of a M.E. and CFS consultant-led service for Norfolk and Suffolk, Nacul et al, (November 2016)
https://drive.google.com/file/d/1jnZRw5vo86N6gMxE3uL9dOpD86ymUdGY/view
Hanging in the balance: M.E. and CFS service development
http://nandsme.blogspot.com/p/the-story-so-far.html?m=1
Dr Luis Nacul, internationally respected ME clinician and researcher, to provide specialist care in Suffolk
http://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html?m=1
http://nandsme.blogspot.com/2019/01/specialist-me-cfs-clinic-in-suffolk.html?m=1
Joint Health Overview and Scrutiny Committee (26/10/18), Suggested Approach regarding development of the M.E. and CFS Service, p13 onwards
http://nandsme.blogspot.com/2018/10/meeting-of-joint-health-overview-and.html?m=1
Norfolk and Suffolk patients complain about the ME & CFS Service (10/08/18)
http://nandsme.blogspot.com/2018/08/norfolk-and-suffolk-patients-complain.html?m=1
M.E. & CFS: Key Information (March 2016)
https://drive.google.com/file/d/1luVQnUF2ncN2rbXzc2Ci45uo1eHC3uCO/view
29 October 2021