At the start of October 2024, we saw initial Government messaging about their plan to get chronically sick people ‘back to work’ and we identified a few red flags. We hoped that by pre-empting the White Paper we would be able to improve outcomes for people living with M.E. and other similar chronic illnesses. Our Managing Director, Sally Callow wrote to the Secretary of State with our concerns, you can read our letter below.
Dear Secretary of State,
I hope this message finds you well. I am writing to express my deep concern about the current proposals to encourage chronically ill individuals, including those suffering from Myalgic Encephalomyelitis (M.E.), to return to work. While I understand the desire to reduce long-term unemployment and support people back into the workforce, these schemes may overlook the complexities of certain chronic conditions, such as M.E, which make sustainable work nearly impossible for many affected individuals.
A significant portion of those you are targeting with these schemes suffer from M.E., a condition recognised by the World Health Organisation as a neurological condition. People with M.E. experience a range of symptoms, including extreme neuro-exhaustion, pain, cognitive dysfunction, and Post-Exertional Malaise (also known as Post Exertional Symptom Exacerbation), where any exertion—mental or physical—leads to a worsening of their condition.
I would like to share a specific case study that highlights the challenges people with ME/CFS face when pressured to return to work:
CASE STUDY:-
K.R. – Berwick Upon Tweed.
When I was first diagnosed with M.E in 1997 I was made to sign up to the Pathways to Work programme by the DWP. It was a condition of my benefits. I was given an NHS Occupational Therapist who had been hired by DWP.They knew nothing about M.E so their whole approach was based on CBT and getting over my ‘mental’ blockage to activity and work. What did I think would happen to me if I pushed myself that bit further? Why did I need to lie down when I could just sit?I also had to go on training to increase my confidence. Getting up early, having to get showered and dressed to leave the house before I was usually awake meant I crashed badly when I got home and took days to recover.I was also given an ‘enabler’ to get me back out into society. We went to aqua health at the local sports centre. Every week trying a bit harder. I recognise now that this was Graded Exercise Therapy. As newly diagnosed and with no other information available I did what the ‘experts’ advised.17 years later I can see that Pathways To Work was of no benefit to me. I’m still unable to work, I’m still unable to do the normal everyday things that other people do. I’m just glad that when my body reacted the way it did to what I was made to do I resisted and stopped pushing myself. If I hadn’t I dread to think where I would have ended up.The stress of being forced into a situation that did not acknowledge the realities of their illness left them in a worse position than before.
Unfortunately, K.R.’s case is far from unique. Studies show that up to 75% of people with M.E. are unable to engage in work of any kind, even on a part-time basis. Programs that fail to account for the nature of M.E. often lead to negative health outcomes, exacerbating symptoms and increasing the strain on both individuals and the healthcare system.
Given the unique challenges posed by M.E. and similar chronic conditions such as Long COVID (of which, half meet M.E. diagnostic criteria), I urge you to reconsider policies that push people into the workforce without first ensuring that their health and capabilities are being appropriately assessed. There must be a focus on individual needs and a recognition that for some, returning to work is simply not feasible without causing significant harm.
In order to properly assess these individuals your staff and independent assessors must prioritise learning about M.E. As a social enterprise that offers online M.E. training to professionals, we have contacted the DWP many times since 2019 and made you aware of our offering. Our training would be invaluable to your staff who cannot make accurate assessments, or informed decisions about a person’s benefits, without even a basic knowledge of M.E. We would also be happy to work with you in creating your own in-house training if you feel that is more appropriate. The lack of knowledge on M.E. within the DWP and your independent assessor outsourcing company causes additional distress for people living with M.E. and means ‘Pathways to Work’ will waste taxpayers money and not be cost-effective.
Please consider the long-term well-being of chronically ill people in any new policies. Offering better financial support, healthcare accommodations, and flexible options may be more effective in supporting those who can work while protecting those who cannot.
Thank you for your attention to this critical issue.
We received their response on the 26th November 2024, read it below –
Dear Ms Callow,
Thank you for your email of 3 October to the Secretary of State about support for disabled people. Government Ministers receive a large volume of correspondence, and they are unable to reply personally on every occasion. I have been asked to respond. The Government knows that appropriate work is generally good for health and wellbeing. It wants everyone to get work and get on in work, whoever they are and wherever they live. It wants people to avoid poverty, and for this to happen it must ensure that disabled people and people with health conditions have the opportunity to work and save for as long as they wish and are able to. Disabled people and people with health conditions are a diverse group so access to the right work and health support, in the right place, at the right time, is key. The Government therefore has a range of specialist initiatives to support individuals to stay in work and get back into work, including those that join up employment and health systems. Measures include support from Work Coaches and Disability Employment Advisers in Jobcentres, Access to Work (AtW) grants and the Work and Health Programme, as well as joining up health and employment support around the individual through Employment Advisors in NHS Talking Therapies and Individual Placement and Support in Primary Care. Employers play a key role in increasing employment opportunities and supporting disabled people and people with health conditions, to thrive as part of the workforce. The Government’s support to employers includes increasing access to Occupational Health, a digital information service for employers (which can be found on the Government website at: www.support-with-employee-health-and- disability.dwp.gov.uk and the Disability Confident scheme
As part of the get Britain working plan, more disabled people and those with health conditions will be supported to enter and stay in work, by devolving more power to local areas so they can shape a joined-up work, health, and skills offer that suits the needs of the people they serve. Additional Work Coach Support provides disabled people and people with health conditions with increased one-to-one personalised support from their work coach to help them move towards, and into, work. Support was made available to all Jobcentres across England, Scotland and Wales from 24 April 2024. The Work Coaches aim to enable disabled people to access employment and wider skills support and our employment programmes earlier. To support people to remain or return to work, AtW provides, a personalised discretionary grant which supports the recruitment and retention of disabled people in sustainable, paid employment. The grant contributes to the disability-related extra costs of working faced by disabled people and those with a health condition in the workplace that are beyond standard reasonable adjustments. It does not replace an employer’s duty under the Equality Act to make reasonable adjustments. The grant provides personalised support and workplace assessments, travel to/in work, support workers, and/or specialist aids and equipment. AtW can fund up to £69,260 worth of flexible, personalised support per person per year. AtW is available for eligible people aged 16 years and over living in Great Britain, with no upper age limit for funding. The Government’s White Paper: Get Britain Working, was published today. Details can be found online at: https://www.gov.uk/government/news/biggest-employment- reforms-in-a-generation-unveiled-to-get-britain-working-again.
Regarding your comment about wanting to provide a service to the Department, opportunities to bid for contracts with the Department are published on the government website. You can use Contracts Finder to: search for contract opportunities in different sectors; find out what’s coming up in the future; and, look up details of previous tenders and contracts.
Yours sincerely
XXXXX
Head of the Ministerial Correspondence Team
We aren’t naïve, this is the latest in a very long line of emails sent to various Government departments since 2018. We knew to expect a generic reply but this is particularly unhelpful; None of our concerns were addressed. This reply does not acknowledge our point that only 25% of people living with M.E. are physically able to be in employment. No amount of schemes, reasonable adjustments, or improvements to Access for Work will get the 75% back into employment. This is the key issue with all of these ‘reforms’, there is a complete lack of acknowledgement that many simply can’t work and that doesn’t make them any ‘less than’ as a human being.
We should also point out that we have been registered users on the Government contract search site since 2018, we have yet to see any relevant contracts that would lead to professionals being trained on M.E./C.F.S. Historically, we have had meetings with regional DWP management staff and they have all acknowledged that training is required – so we persist and semi-regularly point out that training is available.
The DWP has a gap in knowledge, we have the resources and capability to fill that gap.
‘Get Britain Working’
Two days ago, the Government published their shiny new White Paper – ‘Get Britain Working’. We have seen much of this ‘reform’ and rhetoric before, there is no new thinking in this lengthy document.
Neither Long COVID nor M.E. were named in this document. This is odd given these two conditions make up a large percentage of those who are currently not in employment due to ill health, it’s almost as if they don’t exist. We assume that these conditions are included within the Musculoskeletal (MSK) category, though we never can be sure that M.E and Long Covid (M.E. subset) haven’t been categorised wrongly as mental health conditions!
We were going to write a blog specifically on the contents of the White Paper but now think it is enough to say that as M.E and Long Covid are omitted (not even mentioned in the form of a caveat ie. there are some conditions in which no amount of reasonable adjustments would make employment a possibility) this document offers nothing beneficial to the majority of people in these communities, in fact the schemes will probably be harmful for many; remember KR’s case study that was included in our letter? This harm….on repeat). Secretary of State Liz Kendall MP has written about improving health of the nation through prevention yet there hasn’t been any mention of mitigating against covid19 – the ongoing mass disabling event that has caused a big uptick in people being ‘long term sick’.
The recent Government response to our concerns highlights a fundamental issue in the approach to supporting chronically ill individuals, particularly those living with M.E. and Long Covid. Despite ongoing discussions and the availability of resources, the systemic gaps in knowledge and understanding persist. The emphasis on “Getting Britain Working” fails to acknowledge that for a significant proportion of the population, such as those living with M.E., returning to work is simply not an option without causing further harm to their health. The lack of recognition for the unique challenges posed by chronic conditions, as well as the absence of M.E. and Long Covid from the recent White Paper, suggests that these individuals continue to be overlooked by policymakers.
We remain committed to advocating for better understanding and support for people with M.E. and related conditions. The need for specialised training for DWP staff, and for policies that truly reflect the diverse needs of disabled people, is more urgent than ever. Until these gaps are addressed, these ‘reforms’ will likely do more harm than good, continuing a cycle of misunderstanding and inadequately supported individuals. Our work continues, and we will not stop until real change is made to ensure that those living with chronic conditions are treated with the respect and support they deserve.
