Work & Pensions CommitteeWritten evidence submitted by Motor Neurone Disease Association

Executive Summary

(i) We do not accept the Government’s arguments for reforming DLA. It is a well-understood benefit and is in no sense “out of control”.

(ii) We do not perceive any current overlaps in funding between NHS, social care and benefit provision.

(iii) There appears to be a significant mismatch between the Government’s stated policy intention in respect of PIP and the draft criteria published by DWP. While PIP is intended to focus on supporting the individual both to live independently and to engage in wider activities in the community, the draft criteria examine only the basic essentials of living: washing, dressing, moving around and so on – things that social care is meant to cover.

(iv) Although Motor Neurone Disease (MND) is a terminal illness, and the Special Rules system nominally exists for those who are terminally ill, it does not work reliably for people with MND. The definition of “terminally ill” as meaning a prognosis of six months or less is particularly awkward for people with MND: half of people with MND die within 14 months of diagnosis, so while relatively few survive for fewer than six months after diagnosis, many more die shortly after this period.

(v) We are deeply concerned that the present draft criteria will, if implemented without substantial revision, badly let down people with MND.

(vi) Whether people with MND are granted the benefit will depend on the largely haphazard question of their exact condition at the time of their assessment. People with MND could therefore be incentivised to wait until well into their illness before claiming PIP.

(vii) One of our key recommendations to the Govermnent when they consulted on PIP was that assessment should be anticipatory: that is, it should take into account the future progress of MND, not just its progress to date at the time of the assessment. The current draft regulations appear to rule this out.

(viii) We also recommend that claimants should be able to trigger an urgent review, so that a deterioration in their condition can be quickly taken into account

(ix) Once a person with MND is receiving the highest rates of PIP, there is no point reassessing them: MND is degenerative and there is no medical possibility that their condition will improve.

(x) W do not support the proposal to take aids and adaptations into account: it would introduce such massive potential for error into the assessments that it would inevitably lead to many unjust decisions, and many more appeals.

(xi) The relative weighting given to the face-to-face assessment and other evidence will be crucial. Where complex neurological conditions such as MND are concerned, expert testimony from health and social care professionals who know the individual and their circumstances will inevitably be more pertinent and accurate than a one-off assessment by a health professional who will typically not know the claimant or have dedicated expertise in their condition.

Introduction

1. Few conditions are as devastating as motor neurone disease. It is rapidly progressive in the majority of cases, and is always fatal. Patients will, in varying sequences and combinations, lose the ability to speak, swallow and use their limbs; the most common cause of death is respiratory failure. Most commonly the individual will remain mentally alert as they become trapped within a failing body, although some suffer from dementia or cognitive change. There are about 5,000 people living with MND in the UK. Half of people with the disease die within 14 months of diagnosis. There is no effective curative treatment.

2. The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer led branches and 3,000 volunteers. The MND Association’s vision is of a World Free of MND. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

3. This submission covers selected areas of the call for evidence; we have no comment to make at present on those areas not addressed.

The need for DLA reform, including: how well understood DLA is; why the DLA caseload and expenditure has increased; the effectiveness of the decision-making and review process for DLA

4. We do not accept the Government’s arguments for reforming DLA. The benefit is not confusing and complex: among people with MND, 93% say that they feel they understand it, the highest figure for any benefit.

5. The benefit is not “out of control”: increased uptake is a sign of a successful benefit that is well understood among the people who are entitled to it. We would like to see the Government make a clear statement that it intends to maximise uptake of all benefits, so that people who need them do not miss out.

6. We would, however, welcome simplification of the form and process by which applications are made, as despite high levels of understanding many people with MND find this difficult.

The extent to which overlaps in funding exist, particularly with local authority and NHS funding, and including for people in residential care or hospital

7. We do not perceive any current overlaps in funding between NHS, social care and benefit provision: each exists for a distinct purpose and this is generally well-respected in how they are provided in practice. We made this point in our submission to the Dilnot Commission on the funding of social care, and were pleased to see its final report draw the same conclusion.

8. We acknowledge that such an overlap has been presented as a justification for the Government’s proposal to deny the mobility component of DLA to people living in residential care funded by local authorities. We do not believe that any argument along these lines bears scrutiny.

9. It has been argued variously that there is a funding overlap with social care, although this is not the case (“Don’t Limit Mobility”, Mencap et al November 2010), and that removal aligns the position of people in residential care with that of people in hospital, although as care homes are not centres for medical treatment this is not a legitimate comparison.

10. We are concerned, however, that the current proposals for PIP, including the draft regulations published by the DWP, risk introducing an overlap between PIP and social care. There appears to be a significant mismatch between the Government’s stated policy intention in respect of PIP and the formulation of the draft criteria. While PIP is intended to focus on what the individual is able to do, and to support them both to live independently and to engage in wider activities in the community, the draft criteria examine only the basic essentials of living: washing, dressing, moving around and so on – exactly the things that social care is meant to cover. In order to meet the stated policy intention underlying PIP, and to avoid a novel and dangerous overlap with social care provision, the assessment criteria must be re-drafted to examine barriers to independent living and social engagement.

Whether automatic entitlement should apply to people with some conditions or impairments and whether some people should receive awards for indefinite periods

11. It is in many senses positive that the Government is keen to move away from a medical model of disability towards a more social one, and to focus on the individual rather than their illness or disability.

12. For MND, however, this can be somewhat problematic: it is a serious and terminal illness. Setting it within a social model is therefore a challenge, when the needs arising from it are so often highly medical. We therefore do not believe it is appropriate to disregard all medical considerations from the assessment of PIP: some medical diagnoses should lead to automatic entitlement, or at the very least generate a significant weighting within the assessment in favour of entitlement. MND should clearly be one of these conditions.

13. Any award to a person with MND should be for life: it is a medical impossibility for their condition to improve. The award should only be varied if it is first given at the standard rate and needs to be increased to the higher as their condition deteriorates. After that point, anyone with MND should be exempted from reassessment, as it would serve no purpose.

14. It is worthwhile to reflect on the name of the proposed new benefit in this context. While it is right that the benefits system should support disabled people to live as independently as possible, it must not be overlooked that people with MND will inevitably lose their independence, and subsequently their lives, as a result of their illness. Any benefit that fails to recognise this will fail people with MND.

The implications of a six month qualifying period

15. We recommend that the qualifying period be aligned for both PIP and Attendance Allowance at three months. Under the proposed change to six months, combined with the proposed new medical test, a person with MND may not develop sufficient disability to qualify for the benefit at all until some time after their diagnosis.

16. Let us take the case of a person with MND whom a neurologist declines to support for Special Rules, in the expectation that they might live another 12 months or so. The individual goes on to develop a level of disability judged to qualify for PIP three months after diagnosis and subsequently dies within the next six months, their condition having deteriorated slightly more rapidly than their neurologist had anticipated. This would be among the poorer outcomes of an MND diagnosis, but is by no means unheard-of. This person will have been denied support either entirely, or until very shortly before their death.

17. Such problems will arise because of both the longer qualifying period and the inadequacies in the Special Rules system. Although MND is a terminal illness, and the Special Rules system nominally exists for those who are terminally ill, it often does not work for people with MND. The definition of “terminally ill” as meaning a prognosis of six months or less is particularly awkward for people with MND: half of people with MND die within 14 months of diagnosis, so while only a modest proportion survive for fewer than six months after diagnosis, many more die shortly after this period. Unsurprisingly therefore, fewer than half of people with MND report being able to access the Special Rules scheme despite all being terminally ill.

18. We believe that the Special Rules system was intended to extend protection and support to people with devastating, terminal diagnoses such as motor neurone disease, and urge that it be amended to meet their needs and correct a long-standing failing.

19. This might be achieved in several ways. Changing the threshold from a prognosis of six months to 12 months would be the simplest, and would open up Special Rules to people with MND except those with the slowest-progressing forms. This extended threshold might be applied only to specific diagnoses, where progression is often rapid but difficult to predict in any given case.

The design of the PIP assessment, including: the assessment criteria and design

20. We are deeply concerned that the present draft criteria will, if implemented without substantial revision, badly let down people with MND. Nearly all of the various descriptors within the draft criteria could apply to a person with MND at different stages: while not every person with MND will lose the motor function in every part of their body, most will develop many of the impairments described in the draft criteria, including the cognitive ones in some cases. As a result, whether people with MND are granted the benefit will depend on the largely haphazard question of their exact condition when they are assessed.

21. We are concerned that under the current proposals, people with MND could be incentivised to wait until well into their illness before claiming PIP, in order to be sure of success. Alternatively, they will apply, be failed under the assessment, and have to go through an appeal process: by the time this is complete their condition will in many cases have deteriorated to the point where they would have passed an initial assessment anyway.

22. One of our key recommendations to the Govermnent when they consulted on PIP was that assessment should be anticipatory: that is, it should take into account the future progress of MND, not just its progress to date at the time of the assessment. Both the regulations and the explanatory notes published by the DWP appear to rule out any form of anticipatory assessment. For instance, the explanatory notes say:

When considering the definition of disabling effects the risk of an event occurring alone is insufficient, there has to be actual functional impairment or evidence that the risk will occur

23. MND is a complex and unpredictable disease: it is not possible to provide evidence that a particular motor function will inevitably be lost; rather, it is prudent to plan on the basis that any and all motor functions could be lost, in the knowledge that some certainly will, even though it is impossible to say which, in what order or how quickly. The proposed approach does not appear to allow for sensible anticipatory assessment of this kind.

24. The proposal for regular reassessments is also pertinent. MND often progresses so rapidly that unless the reassessments are very regular indeed, they will fail to keep up with changes in the individual’s condition. The only alternative to anticipatory assessment would be to set a very short review interval, perhaps no greater than two months, although this would be very expensive for the Government. Anticipatory assessment is clearly the preferable option.

25. We also recommend that claimants should be able to trigger an urgent review, so that a deterioration in their condition can be quickly taken into account and their entitlement revised accordingly.

The extent to which aids and appliances should be taken into account in the assessment

26. We have made clear to the Government that we do not support the proposal to take aids and adaptations into account. Wheelchairs and other aids are often provided inappropriately slowly to people with MND, and also require modification over the course of the person’s illness: they do not solve all mobility problems, and even the help they do provide can be temporary, as the person’s condition deteriorates further. Adaptations to people’s homes are also extremely unreliable and slow: it is not uncommon for someone with MND to obtain a wheelchair but be unable to use it because the necessary adaptation to their home has not been made.

27. Taking aids and adaptations into account would therefore introduce such massive potential for error into the assessments that it would inevitably lead to many unjust decisions, and many more appeals – the costs of these errors would be enormous, both to the claimants affected and to the taxpayer.

28. The descriptors relating to mobility do not address the barriers that a person with MND might face even when they do have appropriate mobility aids: they assume, for instance, that a journey (whether simple or complex) is feasible to begin with – in reality, a person with MND will often be reliant on the accessibility of public transport, or the availability of a car adapted to accommodate a wheelchair. They also assume that “moving” will inevitably be on a flat surface, and do not assess whether a claimant can go up stairs.

The delivery of the PIP assessment, including: who should carry it out; the approach to tendering for the assessment contract; who should make the award decisions; whether there are lessons to be learned from the Harrington Review of the Work Capability Assessment; and interaction with other eligibility assessments

29. We have identified several issues relating to the delivery of the assessments, particularly in light of experience with the Work Capability Assessment, on which we recommend that the Committee seeks further clarification from the Government.

30. Firstly, while the proposed outline of the process states that most individuals will attend a face to face assessment at which they will have the opportunity to explain their circumstances, experience of the Work Capability Assessment has shown that independent assessors can often be keen to take claimants through a defined set of questions without entering into a proper discussion. How will the Government ensure that this is not repeated for PIP assessments?

31. Secondly, what weighting will be attached to the additional evidence considered by decision-makers, relative to the findings of the assessment? Where complex neurological conditions such as MND are concerned, expert testimony from health and social care professionals who know the individual and their circumstances will inevitably be more pertinent and accurate than a one-off assessment by a health professional who will typically not know the claimant or have dedicated expertise in their condition.

32. Finally, if the assessment is conducted by an “independent” assessor, as the Government proposes, does that mean that the task of conducting the assessment will be outsourced? In discussions about Employment and Support Allowance and the WCA, the Minister for Employment has recently emphasised that the contractor, Atos, is merely performing a service for the department, and that Atos should be considered part of the DWP for the purposes of improving the process. We therefore hope that an in-house assessment programme will be one of the options considered by DWP for PIP: even if an external contractor has the virtue of being “independent”, this advantage has been more than outweighed in respect of ESA by the poor quality of Atos’s delivery, and we see no reason why a programme of assessment run (at arm’s length if desired) by DWP should not be at least as effective.

1 September 2011

Prepared 15th February 2012