Government U-turn on Personal Independence Payments | needs of people with fluctuating conditions to be taken into account | 1 February 2013

February 1, 2013

Following intense pressure from the Countess of Mar and members of Professor Malcolm Harrington's Fluctuating Conditions Group, the Department of Work and Pensions have changed their mind on the way the needs of people with fluctuating conditions – like ME/CFS and multiple sclerosis – will be considered when the new Personal Independence Payments start replacing the Disability Living Allowance on 8 April.

This announcement was flagged up on the DWP website yesterday:

31 January 2013 – PIP assessment guidance to be further strengthened in law

How someone carries out a range of activities will be considered when their eligibility for the Personal Independence Payment (PIP) is assessed, under law, Esther McVey, Minister for Disabled People, confirmed today.

The proposed addition to the regulations now means that legally individuals will be assessed on what they can do safely, reliably, repeatedly and in a reasonable time period.

Following a consultation on the regulations, it was suggested some of the criteria claimants needed to meet was unclear and didn't take into account fluctuating conditions. These amendments seek to address this.

Minister for Disabled People, Esther McVey said:

Our intention has always been the same – we want to target support at those who need it most. We have always said that we will not just look at whether individuals can carry out activities but also the manner in which they do so.

I know that disabled people and their representatives feel strongly that this important concept is set out in law and I am happy to do this.

The addition to the regulations formalises the current wording included in draft PIP guidance.

A draft amending regulation has been published today. A final Regulation will be laid once the PIP regulations currently being considered by Parliament are made but before they come into force in April.

Note to Editors:

The draft amending Regulation is published on the DWP website:

MEA note 1: Our medical adviser, Dr Charles Shepherd, represented the Countess of Mar's Forward ME Group on the Fluctuating Conditions Group and has played a highly significant, behind-the-scenes role in winning this change in Government policy.

MEA note 2: Following this week's U-turn, Disability Rights UK have now updated their factsheet on Personal Independence Payments to include the new abilities test criteria:

8 thoughts on “Government U-turn on Personal Independence Payments | needs of people with fluctuating conditions to be taken into account | 1 February 2013”

  1. Hooray! A great step forward.We owe a big thank you to those who worked so hard to bring this about.

    Now to make sure that the communications from the Government are simple and short, unlike the 20+ page forms currently issued via ATOS.

  2. I am sorry for another negative post, two points;

    The is a standard negotiation ploy, you grudgingly give up something that you know you will lose in the long term, so that you can say that you are listening to everyones concerns. Now they can use it to defend the 20m walking distance.

    Secondly, DLA already has these clauses, and how easy is it to qualify for the current 50m? It’s not going to be any easier under PIP, more likely a lot harder.

  3. This is a big relief, and my grateful thanks to those who have had to work so hard for it, although I have to agree with Stephen’s point about it being “standard” negotiation and smoke screens.

    What can a person hope to achieve with the ability to walk 20 metres?
    What can anybody achieve with the “much greater” ability to cover 50 metres?

    It doesn’t get you from a car to inside a shop, far less back again.

  4. The very specific nature of ME, which is that, as Acheson and Ramsay emphasised, complete rest at the beginning gives the best prognosis for recovery. This is different from simple ‘fluctuating’. The paradox is that the more disability assistance a person with ME gets, right from the start, the better the chance of setting a path towards recovery. The opposite is also the case, the prognosis for the person encouraged (or coerced) into overactivity is likely to be the downward path to a long-term, severe level of disability. Yes, our levels vary from day to day, mostly depending on previous level of exertion – but unlike any other condition, ME starts with a serious level of disability which with proper care, can, over the long term, become less and less. Between the fundamentally hostile attitude society is encouraged to take towards the disabled (see the recent Panorama programme, in which staff of agencies intended to help routinely referred to clients as TLB’s – thieving lazy b…….s)
    and being routinely offered treatments which will make us worse, there isn’t much chance of that. But congratulations to Dr. Shepherd and Countess Mar for getting this far….
    However, studying the DWP document, it seems that a person could be scored as able to get their own meals, as well as able to do various limited other activities, without recognition of the fact that if a person with ME were, for example, both involved in a limited amount of exertion, and getting meals, the cumulative level of exertion would be too much. And no acknowledegement of the fact that ongoing over-exertion will push their illness into more and more severe and long-lasting disability.

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