Formal Complaint about ME and CFS Service made to Suffolk Commissioners

A Service User has kindly shared their formal complaint which was raised with West Suffolk Clinical Commissioning Group last week.  The issues raised are:
  1. The failure to implement a consultant led service
  2. The withdrawal of support for benefit claims by the provider of the service, East Coast Community Healthcare
This is a detailed letter of complaint which must have taken a great deal of time and effort.  It is very important that Commissioners receive feedback regarding the services that they pay for on our behalf.  

Suffolk Commissioning have included the development of the ME and CFS Service in their 5 Year Plan.  In addition West Suffolk CCG has a community engagement programme which is described on their website as follows:
Members of the community engagement group play a vital role in working with WSCCG to ensure patient and public views are listened to and that local people have a real say in shaping healthcare services in west Suffolk.

A copy of the letter of complaint can be found here.

We will let you know when a response is received from Suffolk Commissioning.

19 February 2018

Response from Service Users regarding removal of support for benefit claims

The benefits system is especially difficult for people who have invisible illnesses which can fluctuate and are often poorly understood such as ME and CFS. Last year, the Provider of our local service, East Coast Community Health decided to withdraw the provision of supportive letters for benefits purposes.  These letters described diagnosis, management, symptoms and function and were very much valued by patients.  

The DWP state:
"When deciding benefit entitlement, it is essential that the right decision is reached.  Up to date and relevant information is central to this process."

The PIP form itself encourages submission of evidence from Occupational Therapists. As previously posted East Coast Community Health made their decision, which is likely to disproportionately affect severely affected patients, without consultation. 

We have collated comments from patients regarding this decision.  The comments were made via social media, through local support groups and via this website.  The comments have been shared with local Commissioners and East Coast Community Health.  A link to the comments can be found here

Unfortunately, to date, despite the distress of patients, East Coast Community Health appear to be reluctant to reconsider their decision.

6 February 2018