Hanging in the Balance

Hanging in the balance - ME & CFS Service Development

As we are coming to the end of this year, and the end of this stage of a very long service development process, I thought you might like to read a summary of where we are now, in December 2016.  

The current service is inadequate and there is a lack of parity of care  with other neurological conditions such as for those with Multiple Sclerosis and Parkinson's. 

We currently have an unprecedented opportunity to deliver a consultant led biomedical service which:
  • is cost neutral
  • is what service users have said they want following extensive review and consultation
  • addresses inequalities of care, especially for the severely affected
  • is as recommended by the Joint Health Overview and Scrutiny Committee back in 2009
  • is based on a feasibility assessment requested by the CCG's as part of the service development process
  • is one of the options suggested by the Provider as part of the service development process in December 2015
The proposed changes will form the foundation of a biomedical service that can respond to the needs of patients, be expanded, form links with research organisations and form a template for other services around the country.  It is a very exciting possibility.

From the perspective of the Patient/Carer group this opportunity is a 'no-brainer'.


Will the NHS deliver on years of promises?


The service is commissioned by 7 CCGs in Norfolk and Suffolk and provided by East Coast Community Health (ECCH).  Commitment has been made by all to Service Development.  For the proposal to go ahead all 8 NHS organisations must agree.  I think of it as the 'herding cats model' of commissioning care.

Time is short, a decision is to be made in early January.  Further delay, for example requests for additional review or consultation, will most likely result in failure to deliver change.  All involved know this.

The consultant who is interested in leading and developing the service has already been incredibly patient waiting for the NHS to get organised.  There are also further uncertainties around possible organisational changes after March 2017, and the financial impact of Sustainability and Transformation Plans.

Will one or two of the NHS organisations delay?

Longstanding Inequalities of Care

To date the inequalities of care identified in 2009 have not been addressed, and for those severely affected or with complex need there is very little if any care.  There also remains the fundamental problem of lack of clinical oversight. Coupled with this there is a significant lack of awareness and expertise among GP's.  Many patients feel that they fall into a black hole where there is no care at all.


ME is hit by a triple whammy:

- it is an invisible illness
- it is a poorly understood invisible illness
- it is the poor relation of invisible illness

A little history

The Service was founded and led by the late Dr Mitchell and has been established since the early 1990s.  Dr Mitchell was greatly respected, he endorsed the 2003 Canadian Consensus Guidelines and was cited of as co-author of the 2011 International Consensus Guidelines.  Dr Mitchell was appointed NHS Clinical champion for ME and CFS Services in our area.  He was supported by occupational and physiotherapists.

In 2005 Gt Yarmouth and Waveney PCT made a substantial variation to the service without consulting service users. The Service was changed from 'consultant led' to 'therapy led'.  When Dr Mitchell retired he was not replaced and since then the service has been led by an Occupational Therapist.  There were repeated complaints about the effect of this change on patient care. Gt Yarmouth & Waveney PCT also divested the Service from an acute hospital setting to a community service. 

In 2009 at a Joint Health Overview and Scrutiny Committee meeting the NHS accepted that this had resulted in inequalities of care and committed to a number of strategies to address this, including working in partnership with patients and carers.  

Full NHS Public Health Needs Assessment and New Service Specification

We worked closely with NHS Norfolk to produce a full Public Health Needs Assessment (2012) for people with ME and CFS in our region.  We also worked closely with Commissioners to co-produce a Service Specification delivering a biomedical approach which was signed off in December 2012.

In March 2013 PCT's were abolished and there was a lengthy hiatus while the NHS reorganised itself into Clinical Commissioning Groups.  Meetings with the NHS recommenced in October 2014 with Suffolk Commissioning taking forward the Transformation Agenda to move to the new specification.

The last couple of years

Suffolk Commissioning (IESCCG & WSCCG) have worked incredibly hard to lead the transformation process and recognises and accepts their responsibility to deliver safe and appropriate care to all those in Suffolk with ME & CFS. 

The other 5 Clinical Commissioning Groups:
along with the Provider, East Coast Community Care, now all need to accept their responsibilities, and deliver on their promises by fully committing to the proposed changes.

Moving towards change?

Over the past 10 years members of our Patient / Carer Group have between us traveled thousands of miles to attend meetings, and spent thousands of hours reviewing and creating documents.  Many, many phone calls have been made in attempts clarify the Kafkaesque workings of the NHS and to gain interest and support for our work from various organisations.  

Along the way we have been assisted by some incredibly dedicated people who have dived in to the complex world of ME and CFS Service Development, swam against the tide, and given us their wholehearted support.  

Biomedical research is going forward in leaps and bounds.  The watershed Institute of Medicine Report (2015) from the US describes ME and CFS as 'a serious, chronic, complex, systemic disease that can often profoundly affect the lives of patients' 

The NHS is increasingly moving towards patient led change, and patient centred services, but unfortunately some parts of the NHS are not there yet.
How much longer should people with this ''serious, chronic, complex, systemic disease'' in Norfolk and Suffolk be expected to wait for the NHS to deliver deliver on promises made in 2009 instead of many being left with the crumbs on the plate?

In conclusion

In some parts of the NHS success is measured by activity rather than by better outcomes for patients. We have an opportunity for fundamental and realistic service change which will improve outcomes, especially for the severely affected.

Yet, the decision hangs in the balance, and it is not by any means certain that all of the Clinical Commissioning Groups along with the Provider will commit to the proposed changes.  If they do not, many with ME & CFS in our area will continue to be consigned to a black hole of isolation and desperation.


  1. I await news (hopefully good) from my black hole of isolation. Is there any update? Is there anything we can do?


    1. Thanks for your interest Christine. I will update the website as soon as I have news regarding progress.

      Patients can help by contacting their local CCG (Clinical Commissioning Group). Individual experiences of the limitations of specialist care and problems accessing care via GP's are a vital part of the work towards improving the service for people with ME and CFS. If you would like your comments passed on anonymously just email our group via 'contact us' and we will do the rest.

      Our group is aiming for equity of care with other neurological conditions such as MS. This level of care includes consultant oversight and leadership, a multi disciplinary team and ongoing care and monitoring. Raising GP awareness is also vital.

      Keep everything crossed for good news!

  2. Thank you Ellie. I can certainly contact my CCG with details of my unhappy experiences. Meanwhile everything is firmly crossed.Thanks again.

  3. It's also worth registering with Healthwatch as a member as anonymous complaints and concerns can be registered with them. Both Healthwatch Suffolk and Healthwatch Norfolk are aware of our plight and are on the case to help us!

    1. Thanks for this Barbara. Good thinking! The web link for Suffolk Healthwatch is http://www.healthwatchsuffolk.co.uk/ and Norfolk Healthwatch: http://www.healthwatchnorfolk.co.uk/
      The CEO's of both Suffolk and Norfolk Healthwatch's are aware of the work that our group is doing to improve the ME and CFS Service in our area.

  4. Thank you all,
    Will be informing them all of how desperate it is with children loosing their lives to this hideous and unrelenting situation. Most of the mothers I talk to are forced into making their very sick children attend school when they are too unwell and eventually they loose all ability to live an part of a normal life.


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