The chair of the All Party Parliamentary Group on ME, Annette Brooke MP (Lib.Dem, Mid Dorset and North Poole), has tabled the following Written Parliamentary Question:
To ask the Secretary of State for Work and Pensions, what steps his Department takes to encourage employers to hire and retain staff who have (a) myalgic encephalomyelitis, (b) multiple sclerosis, (c) Parkinson's disease and (d) other long-term conditions
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In the case of ME/CFS I feel this is getting a bit ahead of ourselves to say the least…..
the question should be: “What steps are the government taking to improve the prognosis and recovery/management prospects of people with long term conditions?”
the answer should be: “Investing money into proper bio-medical research and effective treatments (rather than just management) for those with long term conditions such as ME/CFS etc. Collaborating with other nations in tackling the lack of bio-medical research. Also providing incentives to the large pharmaceuticals to invest in such research and encourage researchers into this field. Initial investment would yield high dividends: students able to complete their education and thus have earning potential and adults able to go back to full and productive lives where they can contribute financially and otherwise to their community.”
I’m not sure it is getting ahead of ourselves, though. I actually think it’s a good question designed to draw people’s attention to the inequality of the government’s obsession with sending people back to work.
In a purely medical scenario, yes we need to focus on the bio-research and find effective treatments. I don’t disagree with you at all, there.
But the Secretary of State for Work and Pensions has nothing to do with medicine and illness management, and the DWP is interfering in people’s lives. We can’t wait till a treatment’s been found to address the social side of things.
It’s the old problem of society being built solely around healthy, non-disabled people. Only half the problems people with disabilities face with getting a job (or well, anything really) is to do with their specific disability; the other half of the problems are all down to scaling the barriers that society has put in their way through a lack of awareness.
The changeover to ESA is putting a lot of people with ME and other chronic illnesses in very difficult positions. Even setting aside the issue of those placed into the wrong groups, there’s a lot of pressure on those placed in the work-capable group to take whatever job’s going, even if it’s not really adaptable enough for someone with a fluctuating condition.
And yet it’s one-sided. There are few jobs for them, because there’s no impetus for employers to go looking for disabled people that would fit a job. There’s no encouragement for employers to be imaginative and adaptable in the jobs they offer, so that someone can build their job into the framework of their life-with-illness. When there are so many unemployed people, why would any employer want to employ someone with a long term illness that fluctuates, who can manage only part-time non-intensive work, and for whom they have to make special provisions? (And with ME, of course, that’s pretty much the best-case scenario!)
You raise some interesting points. I would like to state that I would dearly love to return to work and that I feel returning to work or study should be a step in any recovery plan. However, without the protection and support of qualified medical professionals, back to work programs can be a two edged sword. That support can only be provided with greater knowledge of the condition gained through research.
Two different scenarios were experienced by people I know:
Scenario 1) The employer has an active program to aid employees in returning to work. In the employer’s eyes the patient has CFS and people recover from CFS in time and in the employer’s opinion the patient should have recovered by now. The employer has had other members of staff with different illnesses make a successful return to work; so if only the patient would engage with them they are confident that this person could start back to work too. The patient produces further evidence from a reputable specialist which clearly states that they are not well enough to make any attempt to return to work. The employer implies that as people recover from CFS in time, and the patient has been off for long enough being treated by said specialist, then clearly the specialist can’t be much good and the patient obviously has no desire to return to work.
Scenario 2) Having been bedbound the person makes a good recovery over a number of years and is delighted to return to work part time. They know what they need to do to manage their condition but their company Occupational Therapist has different ideas and feels that they should steadily ramp up their work load. They appeal but the company backs the OT. They attempt to comply and suffer a major relapse leaving them bedbound once more. Their employer makes them redundant and they have no energy to fight it. Over the years they make a gradual recovery but never to the point where they could consider attempting any job even part time.
We know that, for some, pushing them too far can cause lasting and possibly permanent damage. We can’t prove it because we can’t even prove we have the condition in the first place. A cynic might suggest that one way of reducing benefit claimants would be to push people into a work program that isn’t appropriate and then denying them support when they cannot keep up with demands being made. Proper medical knowledge and support is needed to protect vulnerable people and for that we need research.
If ME/CFS patients’ health wasn’t wrecked even further by inappropriate treatment protocols (i.e. CBT and GET), would a significant number have already returned to gainful employment?
The way ME/CFS patients are spoken about, you’d honestly think none of us want our lives, our careers and our place in the world back again.
We NEED biomedical research and the ability for doctors to use it sooner rather than later in clinical practice. It isn’t just about money, it’s about speeding up medical and research protocols, so it doesn’t take 20 years for knowledge we have now to be used in the mainstream. At the moment, the whole medical system is like some clunky medieval coat of armour that was once designed to protect patients, but now it encumbers everyone.
The question should be: ‘What is the DWP doing to get people with long term medical conditions back to work *by thorough medical investigation and treatment rather than by threat and intimidation.*’
How are we supposed to get back to work, when the NHS has disowned us and leaves us to rot; taking a pride in not wasting time with ‘unnecessary testing’ of us? I wish they would just hand us out suicide pills instead of torturing us forever, with their disbelief, misdiagnosis, victimisation and vilification.
I have a relative who was trying to to get back to work, part time. He was able to cope with 10 hours a week only. His employers decided that this wasn’t enough, and that while negotiations were ongoing with regard to how his working hours were going to be organised – that he should work FULL time…
Peggy-Sue raises an important point. Many people with ME would like to work part time and can literally only do a few hours a week.
Does the ESA system acknowledge, support and encourage patients back to work within the limits of their capabilities (ie where they actually ‘are’ in reality, not at the state of recovery and competence where everyone thinks they should be.) For eg, could a job be found where someone could work from home for eg for 10 hours a week and be paid for this and the benefits system would then kick in to make up ALL the difference?
There seems to be an unreasonable thought that if someone can only do 10 hours, that they can do 26 hours. ie You are either ‘too ill to work’ or ‘well enough to work full time’. This is not the case with many people. But chronically ill patients can usually only work part time and simply can’t do some extra hours to make up the shortfall – unlike someone who is well but unemployed.
In the current system, what seems most likely to happen is that a patient attempting to get back to work starting with 10 hours a week is then taken out of the ‘Vulnerable/Support’ group and would then find themselves unable to pay their rent and bills, for eg, they would have to find an additional £50-£100 a week to pay the housing/Council tax shortfall, just 2 of many bills one has to pay per week – which of course would be impossible to do as they are medically too ill to increase their hours of work.
I think the ESA system has been largely put in place by people who are well and simply don’t understand the word ‘illness’ and what it does to the body/mind.
ps. By ’26 hours’ above, I meant they wouldn’t be able to increase their hours from 10 to 26 (the absolute minumum required nowadays) and certainly not to the usual 40-48 hours!