Message from our Managing Director Sally Callow
My Board and I have decided to discontinue our DWP campaign, thank you so much to everyone who has supported us with this endeavour for the past 3 months.
This is the document that caused us to launch our DWP campaign, the document was obtained via Freedom of Information request by an M.E/C.F.S patient not linked to Stripy Lightbulb CIC, we saw it circulating on social media.
I contacted my local MP Penny Mordaunt MP to express my concerns about such false and misleading information being vocalised and promoted during a Government meeting, and was reassured by Ms Mordaunt that this was outdated policy and had been replaced years ago. However, our efforts to establish the current DWP policy have proven fruitless.
Why discontinue the campaign?
Unfortunately, Stripy Lightbulb consists of two ‘staff’ members (myself – 20hrs per week and 1 (amazing) volunteer – 5-10 hours per week) and a Board of Directors, who offer guidance and structure. We simply do not have the manpower to conduct this campaign over a longer term.
We have spent over 3 months feverously privately communicating with various Government departments and MPs, and so far we have been either ignored, given inadequate responses, or stonewalled. Yesterday, in response to Freedom of Information requests, we received 2 more ‘we don’t hold documents relating to ME/CFS’ from the Department of Work and Pensions (DWP) and the Department of Health and Social Care (DHSC). That makes 10 FOI requests denied in total. It made us realise that this is too much of David vs Goliath scenario for us to tackle single-handedly.
These three resources may give anyone unfamiliar with the political issues surrounding M.E/C.F.S an idea as to why obtaining documents on Government policy is so difficult.
The Medical Research Council’s Secret Files on M.E/C.F.S
About – Medical Research Council (MRC is answerable to the Department for Business, Energy, and Industrial Strategy – UK Government)
Government Security Classifications
Couple this wider political issue with the knowledge that the wider campaign includes tasks such as undertaking focus groups and other research studies and campaigning all UK MPs for support, and it is obvious that the campaign would have consumed us and taken us away from our core business objective for a much longer period of time than originally anticipated. The campaign was purely and simply to establish the current UK Government policy on M.E/C.F.S, provide researched evidence of the current M.E/C.F.S patient experience of employment and the DWP, and offer our e-training to the DWP and their staff to ensure they could make informed decisions regarding M.E/C.F.S patients. The DWP wields power over many aspects of the financial status of M.E/C.F.S patients both in terms of employment and benefits.
Back to business
We are returning 100% to our ‘objective’ which is to educate the professionals who have a duty of care over patients within healthcare, education, and business to bring about social change for ME/CFS patients in the UK and worldwide.
It’s impossible to overstate how difficult it has been, since September 2018, to get these sectors to recognise the need for education about our disease. It’s an ongoing battle and one that is incredibly draining both physically and mentally. As an M.E/C.F.S patient myself, it is difficult to hear professionals in these sectors state that they don’t need to learn about M.E/C.F.S because there isn’t an issue within their sector, when I know the patient experience contradicts that train of thought – the issues are evidenced and referenced within our e-learning content). We are a stand-alone social enterprise (not for profit). Stripy Lightbulb CIC is not ‘in collaboration’ with any M.E charities or organisations. We took the decision to be autonomous as we did not want to have to conform with one specific charity’s agenda/viewpoint. Unfortunately, being autonomous means we are not part of the support framework within the M.E/C.F.S community. We use resources from around the world to educate on the disease, we don’t educate using one particular viewpoint of what M.E/C.F.S is. We educate from the patient perspective which means learners learn what M.E/C.F.S is, how the patient is affected, and how patients need to be supported within the three sectors mentioned above.
I hope I have explained the reasons behind our decision to discontinue this campaign, and I hope M.E/C.F.S patients are not too disappointed.