My final article

28 Jul

by Max Scott

Part nine of the series The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity

Introduction to the blog series is here.

Max Scott_My final article

Well, this is, sadly, my final piece for Greater Manchester PSTRC, on my own personal experiences with Multimorbidity. I have enjoyed the experience of not only having a platform to vent my own frustration, but to hopefully interest, inform, and help others in a similar situation.

Ironically, the update that I do have since my last post is a perfect example of why I wrote these articles in the first place – it is the ultimate case of a patient not being listened to.

I have been in receipt of Disability Living Allowance (DLA) since my Pituitary surgery in 2005. Well, this year my DLA was changed to PIP (Personal Independence Payment). I didn’t expect much of a problem, as all the evidence and back up from medical professionals was there to be seen. However, it did take a week of putting a couple of hours in a day, with the help of my wife, to get the PIP form done. Naturally, that proved very stressful and tiring for someone like myself who has severe chronic fatigue. The form asked if I would give my permission for them to contact any medical professionals who had treated me, and I agreed to this.

Much to our surprise, I was sent for a PIP assessment, which basically consists of having somebody who has never met you before fire questions at you for an hour, and ask if you can raise your hands above your head, bend your knees, and touch the inside of your leg with the opposite foot. Then it is “Goodbye, you should hear from us in six to eight weeks”. Well, I did. I had failed. Apart from the emotional upset and anger it caused, that meant a large loss of income to me and my wife after receiving DLA unquestioned because all the proof was there for 12 years. The only change during that time is that my conditions have become steadily worse.

Why did this happen? Because they completely ignored the facts. Not opinions, facts. They made sure that I was “two points short” in their scoring system. My wife is my carer, but they said I didn’t need a carer. I have memory problems, they said I don’t have memory problems. I have cognitive dysfunction, they said I did not have cognitive dysfunction. My wife has to administer my medication as I get muddled and make mistakes, they said I sort my own medication out. I have aids in the bathroom, including a frame, a raised toilet seat, and a squatting stool, for severe problems that have been medically recorded. They said I did not need these aids. Not only all of this… but they did not contact any of my doctors or specialists, seemingly because they knew that they would back me up. We applied for a reconsideration; they once again ignored the facts and turned me down.

We have put in an appeal and sought the back-up of our local MP, and he was only too happy to help as he could see the decision was nonsense. We are now in the process of waiting for the date for this appeal, something made even more painful as we are also going to have to attend a coroner’s inquest into the passing of my dear Mother last December, and this is expected to take place between October and December.

In summing up, I can only say how sad I am that, during the process of my series of articles, nothing in the way of Multimorbidity services has happened, no progress has been made for the many sufferers of this life-changing affliction, and I cannot see anything changing in the near future. Marching down Whitehall to Downing Street, chanting and waving placards is not for us… most of us haven’t got the energy! But, eventually, somebody of influence needs to make a noise about this, and the only way for that to happen is to somehow voice our unhappiness and frustration as much as we can and to whom we can, until the term “Multimorbidity” is no longer met with bewildered looks from the vast majority of the population who have never heard of it.

In conclusion, I’d like to wish Greater Manchester PSTRC all the best in its future research and endeavours. To all who have read my articles and have a daily struggle with their health, thank you and I hope you find something that makes life that bit easier and more enjoyable. Perhaps that may even be in the form of a medical practitioner who… listens.

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