DHSC consultation crib sheet
With 4 days to go, here are some copy-and-paste answers to the Department for Health and Social Care's Interim Delivery Plan for ME/CFS.
The deadline to respond to the government’s consultation on ME/CFS is 4 October. People who have been working with the DHSC say the number of answers matters - if a lot of us respond, it will have more of an impact. Yet the the government’s plan is long, confusingly organised and hard to make sense of, even for a healthy person let alone a person living with ME. And the two-month-long consultation was not enough time, given our disabilities.
So here’s a crib sheet. I didn’t write this, I shamelessly stole it from the Cambridge ME Group - with time so short I didn’t even bother to ask permission, but I hope they won’t mind. To respond to the consultation, go to this link, scroll down to the bottom and click ‘Start’.
Obviously, you should feel free to change the answers or add to them to suit your own ideas, and you can skip some of the sections and fill in only the ones that matter to you.
Research
Tick boxes:
Strongly agree
Some content is missing
Text box:
There is positive language but no firm targets. Without these, nothing will change.
Strongly agree with ME Association recommendation: a ring fenced budget and centre of excellence are needed, otherwise researchers won’t enter the field.
A simple diagnostic test is a priority.
Attitudes and Education
Tick boxes:
Strongly agree
Some content is missing
Text box:
As in the previous section, warm words are offered but the strategy has no teeth. If this initiative is to have any effect, it should be compulsory for :
-medical professionals’ training to include a module on ME/CFS.
-every Medical Team dealing with the public to have at least one member trained to deal with people with ME. A&E units should have a trained HCP on duty at all times. Units should offer to refer people with ME to a trained member of staff.
-specialist ME/CFS units to adhere to NICE guideline NG206 unless they can show good medical reason to depart from it.
Quality of Life
Tick boxes:
Strongly agree
Some content is missing
Text box:
My life has been ruined by ME/CFS. I can no longer work; I can hardly leave the house; I can’t exercise or travel; I can’t keep up with friends or family; I can’t do any of the normal social things I did before. Even having visitors at home comes at cost to my health.
There is little or no support from either the medical or the social services. I struggle to be believed, let alone helped. I have all but given up seeking their help.
The NICE guideline says what needs to be done to change this, but I’ve seen no change. The guideline needs to be enforced.
Support for children and young people with ME/CFS
Tick boxes:
Strongly agree
Some content is missing
Text box:
CYP who are too ill to attend school regularly very easily get persecuted by education and health authorities who think that they are either truant or that their parents and gaslighting them (Munchhausen’s Syndrome by Proxy). Children can get removed from their parents and even sectioned under mental health laws. GPs need to be trained to diagnose ME, and teachers need to be aware of it. A diagnosis of ME should be a clear recognition of disability, which should trigger support for the family (including education at home) rather than persecution.
Health Services
Tick boxes:
Strongly agree
Some content is missing
Text box:
Our local Specialist clinic refuses to see people who also have another condition which may induce fatigue. This is absurd. NICE guideline NG206 provides clear diagnostic criteria. If a patient meets them, they should be seen.
The clinic also does not actively refer people on for comorbidities such as POTS. Patients trying to get referrals themselves are sometimes refused on the grounds that they already have a diagnosis of ME/CFS and should be treated via the clinic. This catch-22 points to a lack of joined-up care that the Integrated Care System should have remedied.
When I go into hospital I am treated by healthcare professionals who know little if anything about ME. People with moderate, severe or very severe ME need to be able to lie down and need to be protected from noise, light and other sensory overload. This is not offered and we can come out of hospital worse than we went in.
Training in ME must be included in the training of every HCP from OTs to brain surgeons. Every healthcare team must have a member of staff who has been trained in handling people with ME on duty at all times, including GP surgeries, physio and OT centres, A&E centres, general wards, and outpatient clinics.
Adult Social Care
Tick boxes:
Disagree
Some content is missing
Text box:
I have never had any social care or support from government agencies. This is not because I haven’t tried. We need GPs to be trained to provide an ME diagnosis, and for that to trigger a referral for a social care assessment automatically. Social care suppliers need to be trained in ME as well.
At the moment, local voluntary local support organisations provide such support as I can get. Either support them directly or improve social provision.
Welfare Support
Tick boxes:
Agree
Some content is missing
Text box:
It’s really difficult to access benefits. Assessors are supposed to be trained in ME but still often behave as if people with ME are shamming. The process of appealing takes more energy than most of us with ME have. Too many people with ME are so worn down by the process of inaccurate assessments, mandatory reconsiderations and appeals that they give up and have to rely on family and friends to survive. Once again, a diagnosis according to NICE guideline NG206, given by a GP, should be the deciding factor. It should lead to benefits being allocated according to the diagnosed severity (mild/moderate/severe/very severe) and continued indefinitely unless the sufferer reports that their condition has changed.
Employment
Tick boxes:
Agree
Some content is missing
Text box:
Our local DWP are operating the Access to Work scheme sensitively and appropriately and are going out of their way to try and support people with ME. Unfortunately very few of us can even contemplate working because we are too sick. I, like most others I know, would love to work but I could manage only a few hours a week, would need arrangements to minimise noise and other discturbance, and cannot be sure from one day to the next whether I will be able to work at all. It would be well worth convening a conference to see what can be done about designing jobs that a person with ME can undertake.
Agreed Actions
Research
Agree
Some content is missing
Text box:
There don’t seem to be any hard targets for research. We need to have a large enough ring-fenced budget to attract high quality biomedical researchers. Funds should no longer go to endless low quality studies of behavioural interventions (GET, CBT, lightning process,…) that do more harm than good.
Attitudes and Education
Agree
Some content is missing
Text box:
The agreed actions need to be widened to make it THE NORM that HCPs are trained: all training institutions should be OBLIGED to include ME in training.
Similarly, specialist services (clinics) need to be OBLIGED to follow the NICE 2021 guideline. Maybe involve the CQC.
Broader actions to improve awareness and understanding
Strongly agree
Some content is missing
Text box:
The government ought to launch an awareness campaign so that ME is publicly accepted and understood as a serious, complex medical condition whose sufferers need support in order to live as best they can and play as much of a part in society as they are able to. This should happen immediately.
Improving statutory support
Strongly agree
Use of language in ME/CFS
Chronic fatigue
Yes.
The symptom that makes ME/CFS different form others involving chronic fatigue is post-exertional malaise. This is unique to ME and the term “ME” should always be used in public discourse.
Recovery from ME/CFS
Yes
Recovery is rare. It is much better to talk about stabilisation and optimisation.
Misconceptions that ME/CFS is a mental health condition, or how you think can impact your symptoms
Yes
Living with a chronic seriously disabling illness with little hope of recovery can make one both anxious and depressed. Always remind people that it is a complex neuro-immune illness.
The lack of medical tests to prove someone has ME/CFS
Yes
A trained doctor will go by the four core symptoms defined by the NICE 2021 guideline and treat ‘normal’ test results as excluding other conditions and confirming a diagnosis of ME/CFS. The appropriate response would be ‘I am tentatively diagnosing ME/CFS’ (on firt presentation) or ‘you have ME/CFS’ (after three months).
There are no obvious signs that someone has ME/CFS
Yes
Educate the public to be aware of invisible illness in general and ME/CFS in particular. Then the appropriate response will be ‘Ah you have ME/CFS, I understand’.
Using pacing to manage energy
Yes
Again, education is key so that the public realise that people with ME have to live within their energy budget.
Post-exertional malaise is hard to explain/understand
Yes
An informed person might respond ‘Ah you’ve crashed, you’ll need time to recover’.
How satisfied are you with the consultation process? (optional)
Satisfied
How did you hear about the consultation? (optional)
Social media
Local volunteer support group
This post was edited on 1 April to say that the crib sheet comes from the Cambridge ME Group; and earlier version wrongly said that it’s from the ME Local Groups Network. Apologies for the confusion.