Hi,
I'm Sally Callow, Founder of ME Foggy Dog, a social enterprise based in the UK. As an advocate, I have noticed that increasingly over recent years, the M.E/C.F.S patient community has been frustrated at the perceived lack of legal action from M.E/C.F.S charities in relation to political decisions and what appear to be breaches of the law by Government and policymaking organisations.
The current National Institute of Health and Care Excellence (NICE) M.E/C.F.S guidelines delay has brought this issue to the fore. Many believe this was an unlawful act and yet our charities have, so far, not taken legal action. Today marks 20 days since NICE announced the delay, 9 hours before they were due to be published.
Please read this blog to see how I/we reached this point in the past week.
M.E/C.F.S Patients' Legal Fund
As you read in the blog above, this fund will not be paying for legal action against NICE for their guidelines delay (as it currently stands). The charities are heavily involved with this process and so are much better placed to take appropriate action if necessary and when they deem appropriate.
This fund will enable future legal cases relating to matters that directly affect at least half of the UK patient population i.e. not individuals or specific areas/clinics of the UK.
Think guidelines and policy issues rather than individual PIP disputes or negligence by a specific clinic.
We are waiting to see if this project is successfully crowdfunded before creating our Committee, though there are currently 4 volunteers waiting to get cracking!. Most of us are patients ourselves and so cannot afford to spend lots of time and energy on the formation of a Committee that may or may not be necessary. The need for a Committee is entirely dependent on this project reaching its target. This Committee of 7 M.E/C.F.S patients/carers (still seeking 2 more Committee members from the M.E/C.F.S community - get in touch!) will be responsible for the money raised and will ensure funding will only be allocated to cases that will benefit the M.E/C.F.S patient community in the UK.
Although our fund will only be available for UK legal cases, be in no doubt, political decisions and guidelines published in the UK have a ripple effect worldwide. There are millions of people around the world who are affected by decisions taken in the UK because their own Government chooses to adopt UK guidelines and/or policy. I have been personally contacted by many of these patients in recent weeks, they have been desperate for legal action to be taken as they see the significant impact UK decision-making has on the rest of the world.
Please also consider that Long Covid patients are now also being affected by M.E/C.F.S policy and guidelines due to the similarities between the two illnesses. Again, the ripple effect is far-reaching. The need for this type of project is greater than ever before.
Rough idea of how the fund will work (It will be formally written up in the Committee 'Constitution' and published if this crowdfunding is successful. We will be transparent about how the Committee operates and any funding decisions taken)
- We successfully crowdfund.
- Committee is 'formally' set up.
- A patient/group of individual patients contact us and ask if we could fund a legal case.
- The patient/group of individual patients provide us with an outline of what the cases involves, the name of their Barrister/Solicitor and estimate of costs from their law firm.
- The Committee 'meets' (virtually) to discuss each proposed case and will decide on funding projects based on transparent criteria.
- The Committee pay the law firm direct.
By crowdfunding, the M.E/C.F.S patient community and their allies are paying for this legal action, not one specific person or organisation. The Committee are simply gatekeepers of the funds, this means legal representation can be sought, and viability of the case can be established relatively quickly. Without the need for a delay whilst the proposer raises initial funds to see if there is even a case to be had.
We have decided to raise £20,000 as we believe this is a realistic amount of money for what it is intended for - to 'fund' more than one legal case. However, each individual case will be different and will cost different amounts - much more or less. As you read in the blog above, I was quoted £5000+ VAT by the law firm I was in contact with. However, I am very aware that this was just a starting point. The £5000+ estimate was solely for an initial opinion and advice on the merits of taking the case forward.
Possibilities to be considered when the Committee is formed
-The Fund may simply fund the initial 'opinion and advice on the merits of taking the case forward' on a range of proposed cases.
- Give each proposed case a fixed sum so that work can begin.
- After an extended period of inaction (to be decided by the Committee) remaining funds will be given to M.E/C.F.S biomedical research. The funds will not simply sit in a bank account for years on end.
The responsibility for the legal cases remains with the proposers. Any additional required funding, outside of that given by the Fund, must be raised by the proposers.
As was said at the beginning of this essay, this fund is simply enabling legal action.
If this crowdfunding project is unsuccessful every donor will have their contribution refunded. We need to be realistic as to the costs of taking legal action. We see this project as a test to see if it is possible for the patient community and their allies to fund their own legal action.
We hope to bring about social change for M.E/C.F.S patients through enabling legal action.
Thank you for looking at our project and please donate if you are able to.
Please note that Crowdfunder does not offer Paypal as a payment option. Paypal charges a fee to use the platform and this is why it is too complicated as a donation option given that if the crowdfunding is unsuccessful, refunds will have to be given. £100 donated = £5.20 fee.
Crowdfunder is 0% so every penny of your donation goes into the crowdfund.