The current UK Government is proposing to ‘encourage’ those receiving state financial benefits, due to health challenges and disabilities, to ‘get back to work’, and reduce the financial burden on the ever increasing state benefit system, in itself an understandable objective.
As I currently understand it, the proposal is to “abolish” the capability for work assessment, (currently undertaken by qualified medical professionals to assess the impact of health challenges on an individual’s ability to work), to claim people are ‘fit to work’ or at least look for work. This will apply if an individual doesn’t qualify for a further benefit of Personal Independence Payment, (PIP), a notoriously difficult assessment to pass. Politicians need to take responsibility for their own shortcomings that lead to many who wish to get back to work unable to do so in a timely manner.
For a point of clarity the term ‘chronic’ when used in this post refers to a lifelong condition. Even if able to function, however limited, an individual needs to carefully manage activities and symptoms every day to function within their personal, health induced boundaries, and these will vary day by day.
You’re Holding Us Back
With decades of failure to invest sufficiently in the NHS (National Health Service), timely and ongoing access to conversations with healthcare professionals is not available. I currently have three GP referrals to specialists following my own research into possible investigations and treatments over four years, that may assist with improving my functionality and a return to work. This is beyond the NHS recommended self-management tools that I use daily, and have limited scope for improving my cognitive and physical function enough to work. The shortest wait for a first appointment is at least one year for two of these referrals, and a two year wait for another. There is a risk of, and reality of many with a chronic illness feeling they are being left ‘to get on with it’.
Square Peg, Round Hole
The types of work expected are now more sedentary and require mental, rather than physical energy, therefore not providing an outlet for stress that builds up while staring at a screen all day. This change and impact on health was documented at the turn of the last century when the term Neurasthenia* was mentioned, and is now known as Fibromyalgia. For many, myself included, the severe impact on cognitive decline as a result of living with a chronic condition currently rules out this type of work, or any work requiring nearly any concentration and focus, and chronic fatigue, physical pain and other symptoms currently rule out being safe for physical work.
(*For more information check out Dr Michael Lenz excellent podcast mini series, episodes 105-110, on the history of Neurasthenia.)
A Holistic Approach Is Required
If the Government wants those living with chronic conditions to be able to get back to work, or undertake more work, individuals need to have discussions with medical professionals that discuss and understand their challenges holistically, rather than individual symptoms. Time and money is wasted, including the macro economic impact, with the amount of referrals needed between multiple medical disciplines to try and piece together the next steps.
The Randomness of Chronic Illness
Many of us would love to be able to return to work, or improve our work situation to support our families and financial, and social wellbeing, (living with a chronic illness can be very lonely for some), however due to the random nature of symptoms you never know if, or how you will be able to function from one day to the next.
Watch Your Language
People limited in their abilities by chronic, invisible conditions are not ‘lazy’. Within the Fibromyalgia community there is a large contingent who are, or were high functioning, educated, and in good jobs before Fibromyalgia knocked them sideways, myself included. Such negative and inflammatory portrayal of individuals living with chronic conditions and receiving state support is not constructive, it is discrimination, increases unnecessary stress, and division and resentment in the wider community, and by those charged with objectively assessing our abilities.
Chronic Illnesses & Disability Are Real
Government officials do not acknowledge some chronic illnesses or want to understand how they impact mental and physical ability – or create disability, they are merely an inconvenience to economic Government targets. If someone is able to work a few hours a week within personal boundaries for coping, there will be pressure to increase hours and earnings and reduce any continuing benefit support further, under the threat of financial sanctions if not able to demonstrate efforts to do so. This increased activity and stress will set back individuals in the management of their conditions, many of whom have worked years to maintain a tentative balance to function and cope with the basics in life, thereby affecting ability to work further.
Unqualified Assessment & Targets For Political Point Scoring
The Government is proposing that unqualified Jobcentre Plus Work Coaches will replace qualified medical professionals, in assessing what an individual is entitled to, and are able to do in looking for, or undertaking work. There needs to be caution in interpreting any processes and making assumptions of health conditions, and more worryingly, a focus on targets of getting people back to work. Each individual case will be, and is more complicated than they will have been trained to deal with, and there will be a lack of proper understanding or empathy.
We Can’t Be Put Under One Convenient Label
If a person with a condition is able to function and work it doesn’t mean that another can – it is not clear cut and as tidy as the Politicians would like. Shouldn’t the real question and concern be ‘why is there such an increase in those living with chronic conditions, and what investment is needed to research this?’ The return on investment will be individuals capable of, and available to work.
Walk In Someone Else’s Shoes
It’s often said that if a healthy person sceptical about chronic and invisible health conditions could experience the sensation of a body with Fibromyalgia, chronic pain, or other condition for just five seconds, they would be begging for it to be taken away. People living with chronic conditions are much, much stronger than many realise through what they have to manage and cope with every minute of every day, and do what they can within personal boundaries required through health limitations and personal understanding of their condition. We ARE the experts of living and functioning with our conditions.
A Personal Note
This post has taken weeks to write as cognitive function and my ability to look at a screen allows, and I have been conscious not to let it read like a rant, editing over and over to stick to the general issues as I see them. It’s also taken a lot of courage and been my most challenging post to date. The reality is that without the issues mentioned being aligned, people like myself who really want to make progress in improving their condition, cannot progress quickly enough due to the lack of timely access to medical professionals, and many of us don’t have the option of jumping queues through private healthcare. The added stress of government reform that unfairly penalises and uneducated assumption is not going to improve matters for individuals or the Government. Hopefully this resonates with others too.
Fibro & Photos 
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