ME/CFS: Joint HOSC 12/11/09

The evening before the Joint Health Overview and Scrutiny meeting NHS Gt Yarmouth & Waveney issued this document
The document accepted that the change to the service in 2005 was significant and that the needs of all people with ME/CFS in our area are not being met. The NHS proposed:
- to provide the current service in more locations across Norfolk and Suffolk
- Norfolk NHS to take the lead on the commission a new Consultant service
- to provide GP's training

When the Joint Health Overview & Scrutiny Committee met the next day deep concern was expressed regarding the extremely long delay in providing adequate services for all ME/CFS Patients. The Committee recommended that:

- An acceptable (to patients/carers) consultant led service be set up as soon as possible
- Progress would be reviewed after 12 months but any concerns identified by LINks in the meantime should be taken to the Committee
- As the views of the Patient/Carers were known a formal consultation would only delay matters further
- The importance of the views of service users in gauging success

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ME/CFS Meeting 05/11/09

A meeting was held between Patient/Carer Representatives from Norfolk and Ian Ayres also NHS Norfolk. Ian Ayres confirmed that he will be contacting Commissioners from NHS Suffolk and NHS Gt Yarmouth & Waveney with a view to agreeing proposals for a way forward.

Joint HOSC 30 July 2009

The beginning of the Consultation was to be delayed until October 2009.

In the meantime the Joint Committee recognised that the service was not currently meeting the needs of 'a relatively small number of users'. The Committee wished to see NHS Gt Yarmouth & Waveney take immediate action to remedy this.

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Gt Yarmouth & Waveney Board Meeting 24 June 2009

This document discusses the beginning of the consultation process.

Please note that contrary to what is stated in this document Patient/Carer Representatives did
not agree that the January 2009 Gt Yarmouth & Waveney Draft Service Model should form the basis of the Consultation Document.

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Joint HOSC 12/05/09

The Joint Committee was disappointed by the lack of progress since January and that a draft service model had not yet been agreed.

The Consultation Group has had one meeting so far and more will be needed. It was hoped to have a proposed service model agreed by the Trust's Board by June 2009.

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Joint HOSC 16/01/09

At this meeting NHS Gt Yarmouth & Waveney stated that:
- there had been provisional agreement to the draft service model pending agreed amendments/additions
- when the service model was agreed there would be a 3 month consultation
- no changes would be made to the current service until the new specification was agreed
- the changes to the service in 2005 did not amount to a 'substantial variation' to the service
- attention was to be focussed on moving to a service that fitted in with NICE Guidelines

Concern was raised re
- the lack of consensus between the NHS and Patient/Carer Representatives regarding the shape of the new ME/CFS Service
- the length of time it would take to put the new service into place and the level of care provided in the meantime
- inequality of care for people with ME/CFS

Joint Committee to revisit when the revised service specification drawn up.

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SDPG Meeting 09/01/09

Draft minutes for this final Service Development Project Group meeting were not issued by NHS Gt Yarmouth & Waveney until 10 March 2009. The minutes were not agreed by the Patient and Carer Representatives.

Patient and Carer Representatives were concerned that there had not been resolution to the areas of disagreement that arose out of the discussion of the Draft ME/CFS Service Model presented at the meeting on 9 January 2009. Specifically:
  • The inclusion of CBT/GET
  • The failure to specify a biomedical consultant
  • The failure to specify the Canadian Criteria as the diagnostic criteria
  • The failure to specify timescales for ongoing care reviews other than 'at least annually'
  • The failure to include specific provision for children and young people and the severely affected
On 13 January 2009 Patient and Carer Representatives therefore emailed all of the attendees of the 9th January SDPG meeting stating:

For the avoidance of doubt the PRG are writing to you to reiterate our stance regarding the essential components of the ME/CFS Service Model for people in Norfolk and Suffolk.