Welfare Reform Bill

Additional Memorandum submitted by Sam Barnett-Cormack (WR 66)

Summary

Further to my earlier submission, I would like to share my reaction to the published draft criteria for the PIP assessment. A wide range of problems are identified that represent massive areas of disability that are ignored, particularly in the case of complex/multiple problems, in which no one activity is affected massively, but a wide range are affected moderately, leading to a significant overall difficulty with daily activities. A specific suggestion is made to address some, but not all, of the deficiencies in the proposed assessment.

Background

1. I am once again making this submission as a private individual; further details of my own background can be found in my earlier submission to the scrutiny of this Bill. Though the scrutiny period is nearly over, I hope that you are able to properly consider it in the time remaining to you.

2. I am making a second contribution in reaction to the publication of draft criteria for the PIP assessment. I am glad to see such criteria being published, as that would seem a necessary step in the scrutiny of the Bill.

The Draft PIP Assessment Criteria

3. As I previously stated, this set of criteria appears to principally be a subset of the current DLA criteria, with very little added but a great deal taken away. Is the aim to provide more appropriate support, or to provide less support overall? I would worry if it is considered that the two are either equivalent or compatible, although it is conceivable that more appropriate support might lead to less support overall.

4. A need for intermittent support is identified as being at least half of the time; continual support most be absolutely the entirety of the time involved. This completely excludes needing help less than this, and as many criteria do not have an option for intermittent support, in many cases all but those completely unable to perform the relevant activity are treated as having no problem. This is particularly relevant to those with complex and/or multiple problems, where the need for many instances of minor help amounts to a substantial or severe difficulty with daily activity, but few (if any) activities are individually affected sufficiently to merit any score on the given criteria.

Similarly, a difficulty arising from a variable and fluctuating condition counts if it applies more than half the time. More than half the time means it's treated as always being true, half or less it's treated as never happening. This does not accurately depict the difficulty caused by these problems by sufferers of variable and fluctuating conditions, as each individual criterion may apply less than half the time, but between them the criteria cover the vast majority of the time. One might cover 40%, another 40%, and another 20%, perhaps overlapping; is it right that none of the criteria are treated as applying?

I do support the statement that "[d]escriptor choices should therefore be based on the likely continuing impact of the health condition or impairment as if any treatment or further intervention has not occurred" (point 6.21)

I would be very interested in volunteering for the dry-run assessments, particularly given the poor coverage of my condition (explained towards the end of this submission). I believe that the fact that it's rare doesn't mean it can be ignored, and it highlights a gap in the design approach concerned entirely with providing proxies for cost, rather than actual barriers to daily activities.

The descriptors associated with planning and buying food and drink don't appear to include getting to, from or around the shop. No points would be awarded for needing assistance to actually buy food, only needing assistance to plan it. This seems a glaring gap.

5. With reference to getting to/from/around a shop, internet shopping delivery is an alternative, but the delivery charges generally lead to it being significantly more expensive, particularly for smaller households. The inability to flexibly adapt to lack of stock of the desired items leads to needing more frequent shopping or debilitating trips to local shops to make up for unavailable items.

6. No account seems to be taken of fatigue or pain resulting from an activity, or (in most instances) of safety. I might be able to perform an activity without assistance, but would then be unable to do anything else for the rest of the day; should I be considered able to perform the activity?

Regarding preparing food and drink, it seems that and difficulty is only considered if you require assistance continually during the activity. This is particularly inappropriate for people with fatigue-related conditions, or conditions where cooking activities lead to worsening of symptoms. This people might, for instance, be able to do half the work involved in the preparation of a meal if someone else performed the other half; alternatively, they might be able to perform most of the steps of preparing and cooking a meal, but need someone else to perform some steps for them. It seems ridiculous to consider that such people would be treated as able to prepare and cook a meal without assistance, even if they can do more than half of the work themselves, as without that assistance they would be completely unable to perform the activity.

To meet any of the criteria for needing help with managing medication, you must need 'continual assistance or prompting' – is this to be taken literally, with the prompter saying, "yes, pick up the tablet, now put in in your mouth DON'T SWALLOW YET, now get your drink..."? If it means "on every day or nearly every day", it may be acceptable; if it is a strict 'absolutely every time the claimant needs to take medication' then I would argue that it is not. I would ask you consider this in light of the specific example concerning myself detailed at the end of this submission.

There is also no recognition of needing intermittent help with washing, bathing and grooming. This seems to continue a pattern with regards to intermittent help seen in many of the activities considered. Take the case of a person with a severe balance problem, a case with which I am intimately familiar. The person can, once in the bath, perform all activities the criteria are concerned with. They cannot, however, get into or out of the bath on their own without risking significant injury. Are they to be denied any recognition of this problem?

"Communication support means either support from a person trained to communicate with people with limited communication abilities - for example, lip speakers - or from appropriate aids or appliances" (Activity 9 general notes, page 28) - what about support that is provided by someone untrained, but who knows you and you feel safe around? For many people with moderate, but significantly disruptive, social difficulties, such as high-functioning autism or sever Asperger's, they are unable to engage in social activities without at least one of a trained communication assistant or someone with whom they share mutual familiarity, and with home they are comfortable; in my experience, the latter is often preferable to the former, as the needs of such individuals are so individual, a trained person they are not familiar with will not lead to the trust necessary for comfortable interaction, and the trained person may not be used to their individual idiosyncrasies.

7. Support for socialisation and engaging in social activities seem only to be recognised in the form of communication and severe disruptive behavioural problems. I have experienced severe depression, and known others who have done so; we would not generally satisfy any of the descriptors given, but we need support to engage in social activities. This might include a person willing to devote most of their attention to us to see if we're managing emotionally, or who will guarantee that they will leave with us as soon as we want so we don't have to be alone if we are no longer comfortable. This is all the more important given the fact that social engagement, even if it is difficult, can be a major contributor to improvement in depression, and a lack of social engagement can be an absolute barrier to improvement in some cases.

8. Psychological distress is only recognised in the question of mobility where it is 'overwhelming' when following 'any' journey; this descriptor does not apply if "the person is able to leave the home on any occasion without another person", and yet this is positioned as the lowest-scoring descriptor for planning and following a journey (activity 10 descriptor B, page 31). I would suggest that this should be a very high-scoring descriptor, representing as it does an utter inability to leave their home on their own. The quoted caveat also contradicts the advice given on variable conditions earlier in the draft criteria document.

9. There should be lower-scoring "planning and following" descriptors for those who are able to leave their home along only under very specific circumstances (such as times when there are few people on the streets), or where the distress is only on complex or unfamiliar journeys, where it is not overwhelming, or where there is a significant risk of a significant worsening of a mental health condition; I understand that a common experience with depression is a significant risk of a significant worsening of their symptoms when making unfamiliar journeys unaccompanied, and such a worsening may last much longer than even the day or week of the journey.

In my opinion, DLA worked because it looked at what activities are often affected by disability, but people generally need to do; the goal was still identifying proxies, but it was by considering such essential or normal activities. The draft criteria seem to be aimed at proxies that work reasonably well in most cases, and ignore the fact that people can still be unable to do normal, basic things.

My Specific Case: Narcolepsy

10. As I had feared, the current DLA criteria for getting up and going to bed have been eliminated. Although I might be an edge case, I would like to describe for the committee the nature of the difficulties I have, and I hope you will recognise that they represent a substantial difficulty with daily activities, while not being recognised by the draft criteria.

11. I suffer from narcolepsy, a rare neurological sleeping disorder (diagnosed definitively by Multiple Sleep Latency Test). While the precise symptoms vary, in my case one significant element that is not helped sufficiently by medication is that of waking up in the morning; I do not believe myself to be exceptional in this regard.

12. Medication cannot help because it takes some time to work after being taken in the morning, and even after that it takes up to an hour for me to wake up fully; if I am not supervised, prompted, and on many occasions pulled or prodded for that time, I will return to sleep and wake up after about 2 hours.

13. If I do not have help to wake up to take my tablets in the first place, I will typically sleep at least 12 hours before waking 'naturally', at which point I can get up in the same way as anyone else; alarms rarely succeed in providing the necessary fillip.

14. If I were to have to pay for the support my partner provides in this regard, I imagine it would be rather expensive. I feel this highlights a deficiency compared to the DLA assessment, which takes into account the actual time you require help for in total.

15. I would suggest that some deficiencies in the assessment might be fixed by allowing a 'typical weekly hours' count to be assessed for each activity that does not attract points, or attracts very few, counting the hours of support needed that are not accounted for by the specific descriptors. Additional points could then be awarded based on a sliding scale with regards to the total number of such hours.

May 2011