Meeting with Dr Martin McShane

Director of Domain Two, NHS Commissioning Board

Recently Invest in ME were able to meet with Dr Martin McShane – NHS Commissioning Board Authority, Director - Domain 2- Improving the quality of life for people with Long Term Conditions).

This meeting was set up with Dr. McShane after supporter Alex Hall, a constituent from the Prime Minister’s constituency, had met with Mr David Cameron.

At that meeting IiME had sent a copy of the Lost Voices book to Mr Cameron’s wife with a letter, and also a letter from IiME to the PM requesting, amongst several other points -

to meet a delegation organised by the charity to discuss what could be done to improve research and healthcare for ME patients

In our letter to Mr Cameron we explained that - “We have tried, unsuccessfully, to engage with past prime ministers, ministers for health and chief medical officers to attempt to improve matters. We are always met with civil servants who provide the same inaccuracies and misinformation which leads to no change.

In order to make this opportunity have some meaning we did not go to the meeting merely to complain and demand – but rather to attempt to describe the current situation for ME patients and their families and to provide proposals for how things could be changed.

We created an agenda in order for a way forward to be established.

Our objectives with the meeting were -

  • That commissioning will include appropriate and adequate services for ME

  • Education about ME will be Key objective for CCGs

  • Link services to biomedical research

We wanted to refer to the last ten years or so -

  • with the CMO report from 2002 having made seven major recommendations - none were actioned - and those from the behavioural view of ME who walked away without signing the report ending up getting most of the following research funding from MRC
  • with the NICE Guidelines being created, yet which patients took NICE to a judicial review because of its bias, where the development group was dominated by those who believe ME to be maintained by wrong illness beliefs and deconditioning - and where even the good points (such as not being coerced into accepting bad treatment/shared decision-making/providing accurate information at all stages from when a diagnosis is first being considered/help negotiating the healthcare, benefits and social care systems) are not happening in many (most ?) cases and where the latest biomedical developments are mostly ignored or health care professionals do not know about them, where patients tell us that the clinics they attend are not allowed to provide supportive letters for their benefit applications as this would go against the ethos of the CBT and GET programmes they provide.
  • with the Gibson Inquiry of 2006 making bold recommendations such as recommending that ME research be made a priority and suggesting that £11 million should be made available for research to redress the balance in an illness where too much emphasis has been put on psychological “coping strategies”; and accusing the MRC of merely “paying lip-service” to the call for bio-medical research; and calling for an approach to this illness as important as that given to heart disease or cancer - an Inquiry that the Labour government completely ignored.

Attending with IiME were Dr Ian Gibson, one of the local CCG heads (although five were invited only one attended - a point which we hoped would not go unnoticed by Dr McShane), the head of the local clinic and two parents of a severely affected young ME patient.

After introductions and background information parents of the very severely ill young person gave a presentation of their experiences since their child became severely ill at the age of 8 in 2000.

The presentation was very powerful and was conveyed in a very professional manner despite the obvious anguish and distress which it caused the parents.

  • There was a cluster of 5 people who became ill at the same time in the small village in which they lived
  • Not one GP took it upon themselves to investigate
  • Life was a living hell as their child could not talk, could not swallow and was sensitive to light and noise
  • Severe ME causes panic in healthcare professionals who want quick fixes, and look around for some other causes in parents or patients (Munchausen’s by Proxy, Pervasive Refusal Syndrome and so on ) despite the CMO report recognising ME as an organic illness
  • Good doctors who kept children safe from the threat of child protection orders have now retired or passed away so the parents have nowhere to turn to for support
  • OTs were helpful but in their experience GPs had been terrible
  • Advice/information given by unhelpful GPs and consultants, paediatricians over the years included removal of parental support, physiotherapy, stating that ME is not a real disease, that it was an illness caused by exam nerves etc.
  • GP visits were unannounced, and the family was reported to social services for neglect and the family were then asked to leave the GP service
  • In 2012, after a fairly stable period, tooth surgery caused a severe relapse and the GP decided to resurrect the earlier accusations
  • The family had kept quiet for 12 years but felt now that enough was enough. They had sent complaints to PALS. The doctors had refused to comment.

This representation was enough to convey what many in the UK have felt for a generation and for which little has, or is being done.

Dr McShane said he understood the family’s anger and said he would feel exactly the same if he was in their situation.

He expressed his apologies and acknowledged for the need to balance the system

  • Alleviating stress was important
  • He said he heard what the parents were saying
  • He said Dr Clare Gerada would be appalled if she heard this

IiME had proposals which could be used to move things on.

  • An ME consultancy role for CCGs
  • Standard service model
  • Correct diagnosis
  • Acceptance that there was no one size fits all treatment/management
  • Clinical trials
  • Education of GPs important as lack of knowledge permeates the NHS

The head of the local CCG, who had to leave for another meeting, commented that a needs assessment in Norfolk recognised ME as a physiological condition; that guidance needed for GPs in the form of medical expertise; that education and workshops were needed and that relevant research needed to be carried out.

IiME stated that we were keen on helping with these points and offered to arrange these with the CCGs.

Dr McShane identified three strands coming from our discussions.

  • 1. Empathy and Respect (anger felt by patients and carers understandable)
  • 2.Services (some in the country supportive)
  • 3. Research

The parents of the severely ill child added 4th important strand.

  • 4. Medical practitioners are faced with a lot of conditions.

Instead of suspicion they should accept their limitations and show respect. Patient /carer experiences/expertise should be acknowledged

Dr McShane suggested ways to promote these.

  • CMO leads the agenda
    (IiME mentioned that CMOs had been invited to every single one of the eight IiME annual conferences - without any sign of leading or an agenda for ME)

  • Academic Health Science Networks can help and could look at the Norwich proposal with the charity

Dr McShane commented that to change the quality of life with long term conditions we have to accept what we do not know.

House of Care

1. Commissioning

· needs assessment

2. Route

· The best evidence practice

· Empower patients and carers

· Professional collaboration

· Digital era, use of telemedicine as GPs cannot be expected to know everything

· 21st century model means access to specialist care not impossible

· Research through academia

· Lobbying such as the charity is doing helpful

Frankly, with the meeting coming to an end, IiME felt this was not good enough.

We explained how we had sat in countless meetings, with words said, promises made and nothing ever changes. It was unacceptable.

Empathy was fine, and we were grateful for Dr McShane’s acknowledgement of the poor service given to ME patients and their families.

But we needed to progress – and we had ways, proposals which could be used to progress this.

IiME delegates pointed out the difficulties in getting anything done and we did not want to go away from yet another meeting with nothing, and no action plan.

The local commissioner had promised education of GPs. But we all felt that there is a major problem in the lack of accountability. Nobody seems to want to take responsibility - and this extends from the local level right the way up the chain to the CMO and the Minister for Health. (IiME mentioned that CMOs had been invited to every single one of the eight IiME annual conferences - without any sign of leading or an agenda for ME)

IiME suggested using this area (ME) as an example of a difficult area of medicine and use it as a model for nationwide services.

Dr McShane promised to promote Dr Terry Mitchell’s approach (kind, caring, patient centred).

The RCGP was mentioned and Dr McShane was informed that Dr Gerada , chair of RCGP, was a speaker at IiMEC8 conference in May.

IiME proposed setting up clinical trials which could be initiated under the auspices of the university's clinical trials team. The NHS can participate and perform research – why not here? We suggested two such trials.

IiME proposed setting up a trial of telemedicine, where severely affected patients could be treated by an ME consultant who would not have to be present, where a GP or other professional could sit in and learn about ME.

IiME suggested that a standard service model could be used for ME, and tested, in East Anglia. Other commissioning groups would be able to see the effectiveness and efficacy of this model and it could be developed from there. This service model would be based on a biomedical approach to ME with a trained and knowledgeable consultant(s) and where training was emphasised. GPs could also learn from this and all would be aware of the biomedical research into ME which had and was taking place. Common protocols could become established to enable a consistent approach to treating patients.

The proposal for an examination and research facility in Norwich by IiME includes patients being correctly diagnosed and put forward for biomedical research, with results from the research being applied to patients as soon as possible.

IiME proposed holding workshops with qualified physicians and the charity offered to arrange these as part of the introduction and trial of an appropriate service model, with the charity using its links to various researchers and clinicians here and abroad.
Such workshops could educate healthcare staff and look at patients.

We suggested these projects could serve as pilot projects for the NHS commissioning groups.

Disappointingly Dr McShane stated that he could not force a service model on commissioning groups – it was the responsibility of local groups to do this. This made no sense to IiME as what is the point of a director responsible for commissioning of services if every CCG can decide on its own model, or no model at all?

Outcomes from this meeting

  • Need to educate GPs

  • Research is correct way forward as IiME were proposing

  • Local CCGs responsible

The negatives:

Whilst we felt Dr McShane was genuinely empathetic to the plight of ME patients and their families we see no appetite from any direction in the NHS to invoke change, to rectify the inadequacies in the NHS or to initiate any visionary approach to progressing ME.

Our overriding feeling was that we continue to have to make the changes necessary ourselves.

So an independent charity and its supporters continue to crowd fund biomedical research, continue to crowd source ideas for ME research and continue to raise awareness of this situation – backed by an increasing number of supporters who, themselves, have ideas and are willing to make the enormous effort to make a difference.

All awareness of the problems with ME is useful and we are glad that we met with Dr McShane and that real experiences of patients and families with ME were heard. But it needs more than words to make change happen.

Following this meeting IiME will formalise our views to Dr McShane and to the Prime Minister.

Further Reading:

Last Update March 2013