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Turned down with MS

adrianne

I got DLA for more than 15 years. But I was just turned down for PIP... like there's suddenly a miracle cure for multiple sclerosis.

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Comments

Yadnad

adrianne said:

I got DLA for more than 15 years. But I was just turned down for PIP... like there's suddenly a miracle cure for multiple sclerosis.

You may well have not identified which descriptors you wanted to rely on for the points and not evidenced why those descriptors are claimed.

Misscleo

Thats a disgrace my daughter hss MS so i know some of the problems.
How can the dwp not give you pip for ms when people are getting pip for stuff thats not disaberling
What has this govenment done

Yadnad

Misscleo said:

Thats a disgrace my daughter hss MS so i know some of the problems.
How can the dwp not give you pip for ms when people are getting pip for stuff thats not disaberling
What has this govenment done

The DWP are not mind readers nor do they have any knowledge of medical matters. It is for the claimant to prove that the descriptors you have chosen fit your situation. If I had told the DWP on the PIP2 form that I had had a stroke they would have ignored it. If I had told them what the impact on my life was because of the stroke and sent in evidence to back that up I would have probably got points.
I have a report from the spinal unit at the hospital that clearly says that based on tests carried out I physically cannot walk more than 10 metres without stumbling and being in pain.
When that was sent to the DWP following the loss of my DLA they still ignored it at MR.and said that they could not change the nil decision.

It was only after I appealed and months later only days before the hearing they sent me a letter telling me that they have looked again at my claim and decided that I should get enhanced care & mobility!!

LittleGizmo86

Yadnad said:

Misscleo said:

Thats a disgrace my daughter hss MS so i know some of the problems.
How can the dwp not give you pip for ms when people are getting pip for stuff thats not disaberling
What has this govenment done

The DWP are not mind readers nor do they have any knowledge of medical matters. It is for the claimant to prove that the descriptors you have chosen fit your situation. If I had told the DWP on the PIP2 form that I had had a stroke they would have ignored it. If I had told them what the impact on my life was because of the stroke and sent in evidence to back that up I would have probably got points.
I have a report from the spinal unit at the hospital that clearly says that based on tests carried out I physically cannot walk more than 10 metres without stumbling and being in pain.
When that was sent to the DWP following the loss of my DLA they still ignored it at MR.and said that they could not change the nil decision.

It was only after I appealed and months later only days before the hearing they sent me a letter telling me that they have looked again at my claim and decided that I should get enhanced care & mobility!!

@Yadnad

You just contradicted youself there. You made out like the dwp know nothing about conditions and the poster should have sent in evidence to back up their claims... but then you justified your argument with saying how you sent in evidence to back up your claims and they ignored you anyway?

So basically the original poster probably did send evidence in to back up their claims and the dwp probably ignored it anyway... like they do with lots of people and what you just said was actually really pointless and patronising!

adrianne

LittleGizmo86 - You're right, I DID send in evidence from my neurologist. TEN YEARS OF LETTERS. So, Yadnad, don't make assumptions when you have no idea about what I have or have not done. Aside from which, I find it very difficult to believe the DWP know nothing about MS - it's estimated that there are more than 100,000 people diagnosed with MS in the UK.

atlas46

Hi @adrianne

A very warm welcome.

Could I suggest you contact the MS helpline tel: 0808 800 8000, so they can support you.

Contact the PIP helpline and ask for a copy of your assessment report ( if you have not already done so).

What is most important is that you do not give up on your claim and seek a Mandatory Reconsideration at this stage.

We are here to support and help in anyway possible.

Do not get despondent, over 70 per cent of appeals, are overturned in favour of the claimants. I suspect if you have lived with MS, you will be more than up for
fighting you case.

Let us know if you need any further help or assistance.

wilko

Yadnad is correct the DWP does not know all and every health condition that is presented to them. The decision makers are using the information sent to them from the health professionals who carry out the face to face acessments. These professionals interview claiments and acess if the claiment can meet the descriptors required to be awarded the low or enhanced rate of PIP. To accuse the DWP of not knowing about MS is unfair as when seeing my GP I made a comment, you don't know much about MS, and his reply was no I don't, but I was reffered to a specialist MS nurse who works and is able to refere patients to the Nurology service at major hospitals covering her service area. To many claiment who had enhanced DLA awards find when claim PIP have their award reduced or stopped simply because they don't meet the descriptors for PIP and then have to go through the appeal and tribunal process.

adrianne

Over 100,000 people with MS in the UK is hardly "all and every health condition", for god's sake. It is a serious, but common disease. A "heath professional" who doesn't know about MS is not a professional. It is the DWP's job to know about common diseases.

Topkitten

@adrianne, I'm sorry but I have to disagree with your idea of a health professional. Any General Practitioner knows very little about most illnesses and conditions beyond how to spot them and what procedure to follow after that. There are too many conditions and illnesses for one thing and, despite there being more suffering MS than many others, most serious illnesses are a minority and a high percentage of GP's will never come into contact with someone who suffers them. It would be nice for them to know more but then they would have to specialise and there is a significant shortage of GP's already and we do not want to lose more still to specialities. Also who decides which specialities are more important than others? The government has done this recently with Cancer and now so many doctors are forced to know more about it and hospitals have to prioritise cancer patients. What this means ofc is that everyone else suffers longer as priority patients get seen first.

As for DLA and PIP, there is a major difference in their basic decision making. From everything I have seen and read DLA was more about what you suffered from and PIP is more about how you are affected and suffering with almost no reference at all to the condition itself. Also it is much harder to make decisions about progressive conditions than it is about accident damage, for example. There must be many people in the country with heart problems, MS, Huntingdons and many other progressive conditions that, as yet, are unaffected. Even when they do start being affected it happens usually quite slowly and they don't really need a lot of help until a long time after it is diagnosed. I know this myself as my condition is progressive and it was very difficult to get them to understand why it was causing me the problems it was and, for the first 3 or 4 years after diagnosis the problems were minimal but still difficult to deal with. To the healthy part of the populace there are really only two serious conditions, heart problems and cancer, though dementia is beginning to be added to that short list. It seems to me that in most people's minds if it doesn't kill you it isn't really very serious, until ofc that person begins to suffer from something. Consequently, for PIP, it is more important than ever to get the difficulties clearly understood rather than stating "I have XYZ, so I must be disabled"

Having said all this though I will agree that the standard of the health professionals used in the PIP decision making process is very poor and lack experience and training. PIP has such a bad name now that well trained professionals avoid doing such assessments because they do not want their reputation tainted by being associated with the PIP process. In part this is because the main idea is to reduce costs so the government specified tougher rules but, imo, mostly because the initial assessment questions were badly thought out and put together by people with no real experience of the real world of "disability". I think it has slowly improved a little but it still fails majorly because the questions pressurise the people least able to cope with stress and pressure.

TK

adrianne

I know about GPs - my brother-in-law and nephew are GPs.

Gavel

I do agree that GP's have a limited knowledge of MS. The MS nurses are better qualified in their knowledge. We are very sorry to hear your news Adrianne, MS is hard enough especially in this heat without the extra stress. Hope you get a satisfactory outcome.

We are concerned how little GP's cover in their training about nutrition and using food as medicine. We have been on the paleo diet with Dr Terry Wahls and Sue s cognition has much improved although she is w/c bound.

LittleGizmo86

Im affraid im with @adrianne on this one. Yes the dwp are not medically trained but i would say ms is fairly common and well documented that i would say most people are at least roughly aware of ms and have at least a small idea of what it is.

I to have ms and all health care providers i have dealt with have understood what it is. It was my gp who suspected it in the first place. It was also specsavers who noticed it was a possibility when the saw i have optic nerve problems and queriea optic neuritis. If i have any issues with my sight and say i have optic neuritis the first question from who ever im talking to is always 'is it related to MS' so find it hard to believe medical professionals do not know what it is. Yes they might not be specialists in it but they will be well aware of what is involved.

I fail to believe that those at thw dwp have never heard of it and are not aware that it is a debilitating disease. Any time i have told anyone i have got ms they ask me relevant questions such as if i take meds, and am i going to end up in a wheel chair. I even get 'so you feel tired alot then'. I have never told anyone i have ms and they have had no idea what i am talking about.

Anyway the post in question was stating she has sent in evidence and they ignored it.

adrianne

@LittleGizmo86

Exactly. Most people working in health in any capacity know about MS... the first people who suggested that I probably had MS were my sister's acupuncturist (who I saw for half an hour on a Christmas visit to Canada) and my dentist.

Most people who do not work in health are aware of MS. They assume you end up in a wheelchair fairly quickly and everyone seems to know about MS fatigue. I have seen Public Service infomercials about MS on mainstream TV. It's hardly a secret.

At the moment I am applying for sheltered housing. MS is on the list of health conditions or disabilities that make you eligible.

(By the way, I've had optic neuritis a couple of times. Also my eyes were paralysed for about three weeks once. Vision things scare me more than mobility ones.)

atlas46

Hi @adrianne

I 100% agree with your comments, about the deep seated and well founded knowledge across the NHS, about MS.

Two words take me back 35 years, of my clinical experience, "myelin sheath" are damaged by MS.

This has a profound impact on the bodies central nervous system, as sadly Adrianne you will have found.

I did not need to rehearse my clinical knowledge since then, about MS. As a kind dear friend of mine, informed me she had MS.

It has been a difficult journey for her, but she remains in good spirits.

Please seek the help of the MS society, as I have previously posted, in your rightful claim for PIP.

Best wishes

LittleGizmo86

@adrianne sorry to hear about your eyes

it is rubbish isnt it? Tbf sounds depressing but im actually really used to not being able to see very well now ahaha.

Exactly if joe public know about fatigue and (however inaccurate the assumption may be) think you could end up in a chair... it tells me most people have at least got a basic idea of it.

I was only at a basic eye test for new glasess and the optician took one look in my eyes and said do you have ms? When i said no he showed me my weird optic nerves on the image then explained it all to me and sent me off to neuro. If an optician at specsavers knows what to look for then there must be some pretty rubbish GPs out there!!

Aww that is a brilliant idea with the sheltered housing. When i could work i was a support worker in sheltered housing for people with muscular dystrophy and i thought what a great place to live. Good luck with applying etc. You will have to come back and let us know how you get on with it all

Gavel

Hi LittleGizmo, our GP now retired said that we knew more about MS than he did, which was honest of him. In fact we told our Neuro Consultant all about our paleo lifestyle which he wrote down.

We have applied for planning permission to turn our upstairs into a flat and live downstairs on one level. perhaps with a tenant/carer above.

Pippa_Alumni

Hi everyone,

There's some good discussion and practical suggestions going on here, however please do take note of one of our latest posts- comment on the content, not the contributor. Please make sure your comments are constructive and respect all members of the community rather than targeting individuals, and help us to keep this area a safe and supportive place.

Yadnad

Why are we concentrating on a disease?
If I was to ignore all of my problems caused by accidents, mental health issues as well as Type 1 diabetes complications I am left with just two life limiting and degenerative conditions. The first is under the title of Chronic Pancreatitis and the second is Pulmonary Fibrosis.
The first is linked to Pancreatic Cancer and a whole host of other nasties whilst the second has left me with just one useful lung.

Now just because I suffer from these and the complications that come with them should I expect the DWP to know much about them? Should I expect the DWP to be able to determine how 'disabled' I am? No to both questions.

To be honest even doctors would find it incredible to learn that having the first for 14 years and the second for 4 years neither one actually causes any issues that would put me in the 'disabled' class. They are not even worthy of mentioning on any of my PIP claim forms.

Forget the names of the diseases concentrate more on proving the way they impinge on your life and match any one of the PIP descriptors.

Incidentally I am the only patient at my GP practice that has Chronic Pancreatitis. So I don't even expect my GP to know very much never mind the DWP decision maker or the assessor.

SethLaa

As a MS sufferer may I point out that one of the problems with MS is that NO 2 people are the same with regards disabilities/ailments etc, some people may only suffer mild complications before a period of remission and are therefore still able to lead a 'normal' life whereas others such as myself suffer with a 'progressive form' of MS on a 24/7 basis, I stayed in work for as long as possible until my employer had to release me 14 months ago and am now virtually unable to walk or use my arms. I will soon be transferring from DLA to PIP and should have no problems but it wouldn't have been so easy to do a couple of years ago as I was able to walk much easier then. The only people who really know just how much you suffer is family,doctor and more importantly your MS nurse, sorry for the long post but please keep fighting your corner.