Finally - NICE have published the rewritten guidelines

 

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;

 


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


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Quotes


  1. NICE chief executive professor Gillian Leng stated NICE is:


"now confident that the guideline can be effectively implemented across the system"


  1. 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.”


  1. 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."


  1. 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."


  1. 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."



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Further information

  1. 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

https://thesciencebit.net/2021/08/10/journalists-covering-me-cfs-dont-ask-about-the-new-nice-guideline-ask-about-the-old-one/


  1. 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


  1. Inequalities of care identified by the NHS in 2009 

https://drive.google.com/file/d/0B1KcCpwxF0UHZjc4YTYzZDktZmJlZS00NmMwLTkzODYtMWQwYTY1OGM4YmU1/view?ddrp=1&hl=en_US&pli=1&resourcekey=0-ERheItGUjh-f4p18n7nOTw


  1. 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

https://drive.google.com/file/d/0B1KcCpwxF0UHNDA3YTNmZGMtZjIwNS00MWQxLThlOWItZTQ2NGNjMjE3MWY5/view?ddrp=1&hl=en_US&resourcekey=0-o3PY3CNm4hXL-tq-xPSvvg


  1. Norfolk and Suffolk M.E. &  CFS Patient / Carer Group 2009 Patient Survey

http://nandsme.blogspot.com/p/patient-survey.html?m=1


  1. Full Public Health Needs Assessment for M.E. and CFS Services in Norfolk and Suffolk (2013)

https://drive.google.com/file/d/0B1KcCpwxF0UHNkpLejk4NlZSTDg/view?resourcekey=0-aj0jDRltawhrQ5VRdjbeag


  1. 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


  1. Hanging in the balance: M.E. and CFS service development

http://nandsme.blogspot.com/p/the-story-so-far.html?m=1


  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


  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


  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


  1. M.E. & CFS: Key Information (March 2016)

https://drive.google.com/file/d/1luVQnUF2ncN2rbXzc2Ci45uo1eHC3uCO/view




29 October 2021

An Opportunity to Volunteer for Research

The Quadram Institute on the Norwich Research Park held a public meeting last week to talk about their ongoing research into ME.  

Barbara Robinson kindly attended on behalf of the Patient / Carer Group and has produced a one page summary which can be found here.

Participants for the research are to be recruited from past and present patients of the East Coast Community Healthcare (ECCH) ME & CFS Service.  Recruitment will be coordinated by Jo Wiggins and Louise Halliday who are Occupational Therapists working within the ME & CFS Service.


10 February 2020

Specialist ME - CFS Clinic in Suffolk Suspended

In order to meet the needs of moderately and severely affected patients in Suffolk, a Specialist ME - CFS Service was established last summer, with care provided by Dr Nacul.  Feedback regarding this service has been very positive.

The Patient / Carer Group was contacted last week by Suffolk Commissioners and we are extremely sorry to let you know that due to unplanned and unexpected changes to circumstances, the clinic will be suspended as of April 2019.

The Suffolk Clinical Commissioning Group's have released the following statement to GP's:

‘Due to a change in circumstances Dr Luis Nacul will no longer be available to deliver the ME/CFS specialist service in Suffolk from April 2019.

As a result the service will be unable to process new referrals with immediate effect but Dr Nacul will see patients who have already been referred and will ensure that all patients in the caseload are reviewed between now and the end of March 2019 and discharged with an appropriate management plan.

The CCG and Suffolk GP Federation will review options for the service going forward and will advise further on that at a later date.

We would like to thank Dr Nacul for the support he has provided and wish him well for the future.'
Any queries from Healthcare Professionals can be directed to Ipswich and East Suffolk CCG.

The Patient / Carer Group would like to add our thanks to Dr Nacul for his much valued work in Suffolk. We extend our best wishes for Dr Nacul's future endeavours, especially with the ME Biobank at the London School of Hygiene and Tropical Medicine.

Moving Forward

 

The Patient / Carer Group has been assured that the NHS in Suffolk is still fully committed to delivery of specialist care for the unmet needs of moderately and severely affected patients. We are continuing to work with Commissioners in Suffolk to seek resolution and reinstatement of a suitable service as soon as is practicable.
 

Note

The community service provided by East Coast Community Health continues to accept referrals via your GP.  The Patient / Carer Group is in ongoing contact with the CCG's about the longstanding concerns regarding this service, especially as formal complaints to the Norfolk & Waveney CCG's made last summer remain unaddressed.


31 January 2019

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 26 October 2018 - Meeting Documents

The documents for the meeting of the Joint HOSC on 26 October can be found here.  

The Patient / Carer Group is grateful to the Joint HOSC for their continued scrutiny of the ME and CFS Service in Norfolk and Suffolk. 

A representative of the Patient / Carer Group will be attending the meeting. A presentation will be given at the discretion of the Chair of the Joint HOSC.  

Information Requests

You will see that there is a considerable amount of information regarding the ME and CFS Service which can be found from page 13 onward.

Detailed information has been requested from the Clinical Commissioning Groups who purchase the service and East Coast Community Health (ECCH) who provide the service.  

The Joint HOSC has considered this information and information submitted to previous Joint HOSC meetings.  The Joint HOSC has also considered their previous recommendations regarding the ME and CFS Service.  The Joint HOSC have detailed their suggested approach in the light of the updated information received from the NHS.

Joint HOSC Papers

There are five main sections dividing up the Joint HOSC papers regarding the ME and CFS Service:

  1. Purpose of the meeting and details of the information requested from the CCG's and ECCH: page 13 
  2. Detailed background: page 14 
  3. Suggested approach by the Joint HOSC after the lead CCG and ECCH have presented their reports: page 16 
  4. Action that the Joint HOSC may wish to consider taking: page 17 
  5. Report from the NHS in response to the request for detailed information by the Joint HOSC; Appendix A: page 19 onward

Key Focus Areas

(a) An update on the Clinical Commissioning Groups (CCGs) and East Coast Community Healthcare’s (ECCH) work to improve ME/CFS services in Norfolk and Suffolk.

(b) Examination of the level of information provided to primary care about ME/CFS and the services available in Norfolk and Suffolk and the information made available to the public in various healthcare settings.

(c) Examination of the divergence in the ME/CFS services commissioned by Norfolk and Suffolk CCGs.


The Joint HOSC papers make reference to an Open Letter dated 8 October 2018 from the Patient / Carer Group sent to the Norfolk and Waveney Joint Strategic Commissioning Committee.  This letter is linked to the next post.

25 October 2018

Norfolk and Suffolk patients complain about the ME & CFS Service

Patients from both Norfolk and Suffolk have made formal complaints to their local Clinical Commissioning Groups (CCG's) who purchase care for people with ME and CFS. 

The response from Suffolk Commissioning regarding a complaint made earlier in the year can be found here

The complaints have centered around the failure to develop the ME and CFS service. The current community service is provided by East Coast Community Health (ECCH). The same issues are raised by patients in feedback to ECCH every year but no improvements have been made. In fact the level of service has been reduced and outcomes are worsening. Far fewer home visits are made now, which especially impacts on severely affected patients. In addition last summer the highly valued support for benefit claims was withdrawn without any consultation.  Children's services remain fragmented.

In 2016 six of the seven CCG's in Norfolk & Suffolk (Great Yarmouth and Waveney CCG refused to contribute) funded a feasibility assessment for the implementation of a consultant led service. The study concluded that a consultant led service could be set up, on a cost neutral basis, which would go some way to addressing the significant inequalities of care.

Unfortunately the seven CCG's could not agree on a way forward. However the two Suffolk CCG's have commissioned specialist care from Dr Nacul on a limited basis for moderately and severely affected patients. Dr Nacul heads the CureME Team at the London School of Hygiene and Tropical Medicine which is the home of the ME Biobank. 

A copy of the July 2018 statement from the Suffolk CCG's can be seen here

It is worth remembering that the Service Development process was set up by the NHS in 2009 as a partnership between Patients / Carers and Commissioners to improve the local service and address unmet need. The NHS recognized that the current service is inadequate.

A full public health Needs Assessment was carried out by the NHS Norfolk which identified that the local service has contact with fewer than a quarter of patients likely in need of support and that there is no coherent commissioned service for children. A Service Specification was also agreed between Commissioners and Patients / Carers. 

After the CCG's were created in 2013 a detailed Action Plan was drawn up to implement service change. Unfortunately the Provider, ECCH, has been resistant to change and not all of the CCG's have been supportive of the process.  At the current stage in the Service Development process inequalities of care have increased, rather than been addressed.

It is surprising therefore that despite this lengthy and complex process Commissioners from Norfolk and Waveney have not issued any statement to their ME and CFS patients to explain why the opportunity to significantly improve the service was not taken forward. 

Norfolk patients have made formal complaints as they are understandably very concerned by the inequality of care between Norfolk and Suffolk, the lack of action by their CCG's, and the lack of transparency around decision making.  The issue was covered in the Eastern Daily Press on 27 July 2018.

The Norfolk and Waveney CCGs have formed a Joint Strategic Commissioning Committee (JSCC). The JSCC meets every two months in public and will be meeting on the 21st of August. A discussion paper regarding the ME and CFS service will presented. All the papers for the meeting on the 21st of August will be available on the Norfolk CCG websites from the 14th of August.

Norfolk patients have been told that a full response to their complaints will not be issued until after the JSCC meeting on 21st August. It is unclear why the Norfolk CCG's are not responding to complaints about decisions made last year, until after 21st August this year.

Norfolk patients have not been asked for their views regarding the decisions made by their CCG's.  The Patient /Carer Group will submit a paper to the JSCC for their consideration and we hope that the views of patients are included in the discussions.

10 August 2018

Response to the NICE draft scoping document on behalf of LocalME

NICE are currently reviewing the guidelines for ME and CFS.  LocalME have prepared a response to NICE's draft scoping document which you can find here

The response was collated and written by Barbara Robinson, sincere thanks to her for all her hard work on this document in a short time frame.

It is a long document, but is worth reading, especially the general comments at the end which deliver perspective on service change from the experience of the work that has been going on in Norfolk and Suffolk for many years especially:

  • NICE should not make things worse than they already are
  • The needs children and young people are of considerable concern with 'pop up clinics' with no specialist oversight, parents accused of FII and the failure of health and social services to deliver appropriate, co-ordinated care
  • The needs of the severely affected have also been neglected
  • The lack of accountability for services for people with ME & CFS
  • The importance of the patient experience 
  • How in Norfolk and Suffolk the aims of partnership working have hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability
If you would like to read further on the topic information from the ME Association can be found here

The next stage is the appointment of members to the guideline committee.  The committee will meet in November.  The aim is for new draft ME and CFS guidelines to be published in April 2020.


7 August 2018

Dr Luis Nacul, internationally respected ME clinician and researcher, to provide specialist care in Suffolk

Suffolk Commissioning have released a statement today confirming that Dr Luis Nacul will be providing specialist care for patients in Suffolk with moderate and severe ME and CFS.  This will be on a limited basis from July 2018. Currently care will not be provided for children and young people and home visits will be considered on a case by case basis.  Referral will be via your GP.

You may recall that Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS.  Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the MECFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk.  We are incredibly lucky that the services of Dr Nacul have been secured, even though it is on a limited basis.

In 2016 Dr Nacul, at the request of six of the seven CCG's who commission the Norfolk and Suffolk ME and CFS Service, carried out a feasibility assessment for the implementation of a biomedical consultant led service in our area.  

Unfortunately the CCG's in Norfolk, Suffolk and Gt Yarmouth and Waveney were unable to agree a joint way forward.  This appeared to be due in part at least to the differences between the CCG's regarding the way services for people with ME and CFS are prioritised.  

In addition, East Coast Community Health (ECCH), who deliver the current service have been, throughout the service development process, reluctant to embrace change to improve outcomes for patients. Annual patient surveys by ECCH have demonstrated year on year worsening outcomes following contact by patients with the service.  ECCH identified additional costs after the feasibility study was carried out which meant that the proposals for the new service could no longer be delivered on a cost neutral basis.

Suffolk Commissioning have been leading the Service Development process since 2014 and have remained committed throughout to delivering much needed improvements in care for people with ME and CFS.  The Patient / Carer Group would like to express our sincere thanks for all their hard work in what has been a very difficult climate financially and organisationally.

Patients and Carers will continue to monitor the service delivered by ECCH and by Dr Nacul. It is over 10 years since the service development process began and it has been clearly established what patients want from their local service.  Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk will continue to be addressed by Patients and Carers.  

This website will continue to be updated with news of changes as they occur.  We hope that the service provided by Dr Nacul will be expanded as demand grows.

9 July 2018