The Provider of the Norfolk and Suffolk ME and CFS Service contact patients to ask for their views regarding their experience of the service.
The most recent survey took place earlier this year and a report was written in April 2015.
You can download a copy of the report from here.
The report is well worth a read, especially the comments of the respondents which are included at the end of the report. These comments have been analysed and will be taken into account as we transition from the old specification to the new biomedical service specification.
The time and effort that patients take to fill in the form and add, sometimes very detailed comments, are much appreciated by both the NHS and our Patient and Carer Group.
Meeting with NHS Commissioners 3 September 2015
A meeting with Commissioners took place on 3 September 2015.
The minutes for the meeting can be downloaded from here.
We are continuing to discuss delivery of the recommendations of NHS Norfolk's comprehensive Needs Assessment, finalised in 2012 and which identified the appropriate level of service provision for people with ME and CFS, and their carers in our area.
The next meeting is scheduled for 3 December 2015. Please Contact Us if there is anything that you would like raised at the meeting.
The minutes for the meeting can be downloaded from here.
We are continuing to discuss delivery of the recommendations of NHS Norfolk's comprehensive Needs Assessment, finalised in 2012 and which identified the appropriate level of service provision for people with ME and CFS, and their carers in our area.
The next meeting is scheduled for 3 December 2015. Please Contact Us if there is anything that you would like raised at the meeting.
Eastern Daily Press - Tributes paid to ‘compassionate’ doctor who paved the way for cancer centre at Norfolk hospital
A “compassionate and caring” doctor who was a leading light in the development of a specialist cancer centre at Gorleston’s James Paget Hospital has died aged 74.
Dr Terry Mitchell will be remembered as one of the pioneers of the Sandra Chapman Centre and the Norfolk and Suffolk ME/CFS (chronic fatigue syndrome) service.
He died on July 3, three years after a diagnosis of mesothelioma.
In 1982 he was the first haematology consultant to join the staff of the newly built James Paget hospital having moved to the Lowestoft area from Charing Cross Hospital in London with his wife Dr Anne Mitchell, also a consultant in microbiology, and their two daughters.
Over a 20-year career at the James Paget, Dr Mitchell initiated the fundraising and building project, which resulted in the provision of the Sandra Chapman Centre.
The idea for a dedicated treatment centre for patients suffering from haematological illnesses and cancer first came from Dr Mitchell’s discussions with one of his patients, Sandra Chapman (former Deaconess of Hopton and Corton churches).
Sandra was an inspiration to Dr Mitchell and his commitment and dedication lead to and a two year fundraising campaign.
The result was the Sandra Chapman Centre which has provided care to local patients ever since.
As well as looking after patients in his role as a consultant haematologist, Dr Mitchell established the first consultant led service for patients with ME/CFS in Norfolk and Suffolk and was a national champion for the region for many years.
Dr Mitchell was supported in this by the efforts and campaigning of patients and families affected by ME/CFS, and long after his official retirement as a haematologist, he still carried on working with this group of patients.
He was also passionate about the training and support provided to medical students and young doctors. He was appointed as Associate Dean to the Cambridge University clinical school, a role which allowed him to directly help doctors with their training
Many patients and staff who knew him well have made tributes to Dr Mitchell.
Before and after retirement Dr Mitchell enjoyed pastimes including gardening, entomology, and as an experienced ornithologist, along with Anne, they enjoyed extensive travel across the world and in his home county, watching and studying birds.
Dr Anne Mitchell thanked all friends, staff, patients and Steve Haughton (civil celebrant) for attending Terry’s celebration of life and their overwhelming tributes, support and donations made in Terry’s memory.
Former patients, relatives, nurses, doctors and friends joined the family on Friday July 24 at the Parkhill Hotel to remember and celebrate his life.
Dr Charles Shepherd, medical adviser to the UK ME Association, said: “The words kind, compassionate and caring all immediately come to mind when I think of Dr Terry Mitchell. He will be greatly missed by his patients with ME/CFS – and he must have seen a huge number during his professional career.
“And we should never forget that Terry was one of a very small number of clinicians with NHS consultant status who wasn’t afraid of supporting his patients when he knew something was clearly wrong – his strong criticism of the NICE guideline and supporting the High Court judicial review of the guideline being just one example.”
Death of Dr Mitchell and an opportunity to celebrate his life and work
The Mitchell family wish to let former colleagues and former patients know the following;
Dr Terry Mitchell, a leading ME/CFS specialist in the UK, died at home on Friday 3 July 2015 after a long battle with debilitating illness.
Dr Mitchell was the Consultant clinical lead of the Norfolk, Suffolk and Cambridgeshire NHS ME/CFS Service until 2008 and thereafter ran the Peterborough ME/CFS Service until his retirement in 2011.
Under sometimes difficult circumstances, he cared for thousands of patients throughout his career with great compassion and humanity. He also quietly acted as an advocate for ME sufferers in local, national and international fora.
Dr Mitchell personally endorsed and ensured distribution of the Carruthers et al Criteria (2003) and Overview (2005) documents to all referring clinicians in his NHS practice areas. He subsequently went on to co-author the International Consensus Criteria (2011) and Clinical Primer (2012) along with Dr Bruce Carruthers and colleagues.
He was a critic of the UK’s National Institute for Health and Clinical Excellence (NICE) clinical guideline 53 for ‘CFS/ME’ patients.
Dr Mitchell will be greatly missed by many former patients, colleagues and friends as well as by family. He was a true humanitarian.
The Mitchell family wish to have a private funeral for immediate family and friends.
Details of an opportunity to celebrate Terry’s life and work, together with an RSVP can be found here http://eame.org.uk/ Please reply as soon as possible.
The intention is to hold this thanksgiving in Suffolk on Friday, July 24. Friends, colleagues and past patients will all be welcome.
Dr Terry Mitchell, a leading ME/CFS specialist in the UK, died at home on Friday 3 July 2015 after a long battle with debilitating illness.
Dr Mitchell was the Consultant clinical lead of the Norfolk, Suffolk and Cambridgeshire NHS ME/CFS Service until 2008 and thereafter ran the Peterborough ME/CFS Service until his retirement in 2011.
Under sometimes difficult circumstances, he cared for thousands of patients throughout his career with great compassion and humanity. He also quietly acted as an advocate for ME sufferers in local, national and international fora.
Dr Mitchell personally endorsed and ensured distribution of the Carruthers et al Criteria (2003) and Overview (2005) documents to all referring clinicians in his NHS practice areas. He subsequently went on to co-author the International Consensus Criteria (2011) and Clinical Primer (2012) along with Dr Bruce Carruthers and colleagues.
He was a critic of the UK’s National Institute for Health and Clinical Excellence (NICE) clinical guideline 53 for ‘CFS/ME’ patients.
Dr Mitchell will be greatly missed by many former patients, colleagues and friends as well as by family. He was a true humanitarian.
The Mitchell family wish to have a private funeral for immediate family and friends.
Details of an opportunity to celebrate Terry’s life and work, together with an RSVP can be found here http://eame.org.uk/ Please reply as soon as possible.
The intention is to hold this thanksgiving in Suffolk on Friday, July 24. Friends, colleagues and past patients will all be welcome.
Meeting with NHS Commissioners 4 June 2015
A meeting with Commissioners took place on 4 June 2015.
The minutes for the meeting can be found here.
The minutes for the meeting can be found here.
Meeting with NHS Commissioners 24 February 2015
Minutes for the meeting have now been agreed. You can download them here.
During the meeting we discussed the transition from the old service specification to the new specification. The new service specification has been agreed with service users and is based on the NHS Norfolk Needs Assessment (link on the Homepage) also agreed with service users,
As part of the process the NHS are to place an advertisement for a consultant to lead the new service.
Minutes of this meeting will be posted as soon as they are available.
The new specification is committed to the reinstatement of an acceptable patient endorsed Consultant led service as recommended repeatedly by Norfolk and Suffolk Joint Scrutiny since 2009.
Failure to do so could lead to patient harm and a failure of duty of care. If an appropriate service is not implemented service users will consider raising complaints with Clinical Commissioning Groups locally via Healthwatch and/or complaints to the Care Quality Commission under their new enhanced powers as of April 2015 which hold local authority (and Local Authority Public Health Services) to account.
Please contact us if you have any queries.
During the meeting we discussed the transition from the old service specification to the new specification. The new service specification has been agreed with service users and is based on the NHS Norfolk Needs Assessment (link on the Homepage) also agreed with service users,
As part of the process the NHS are to place an advertisement for a consultant to lead the new service.
Minutes of this meeting will be posted as soon as they are available.
The new specification is committed to the reinstatement of an acceptable patient endorsed Consultant led service as recommended repeatedly by Norfolk and Suffolk Joint Scrutiny since 2009.
Failure to do so could lead to patient harm and a failure of duty of care. If an appropriate service is not implemented service users will consider raising complaints with Clinical Commissioning Groups locally via Healthwatch and/or complaints to the Care Quality Commission under their new enhanced powers as of April 2015 which hold local authority (and Local Authority Public Health Services) to account.
Please contact us if you have any queries.
Meeting with NHS Commissioners 23 October 2014
A meeting between NHS Commissioners and the patient/carer group was held on 23 October 2014 to discuss implementation of the new Service Specification. Final minutes for this meeting have now been uploaded. Please click here
Please contact us if you have any queries.
Please contact us if you have any queries.
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