Welfare Reform Bill

Baroness Thomas of Winchester Excerpts

Thursday 3rd November 2011 Grand Committee

Moved by

[Baroness Thomas of Winchester]

52DA: Schedule 1, page 107, line 26, at end insert—
“( ) For the purposes of introducing Regulations under this section —
(a) earnings shall not include any payment in respect of expenses wholly, exclusively and necessarily incurred in the performance of the duties of the employment.(b) notional income shall not apply in respect of any amount of income other than earnings, or earnings derived from employment as an employed earner, arising out of the claimant’s participation in a service user group;(c) “service user group” means a group of individuals that is consulted by or on behalf of—(i) a Health Board, Special Health Board or the Agency in consequence of a function under section 2B of the National Health Service (Scotland) Act 1978;(ii) a landlord authority in consequence of a function under section 105 of the Housing Act 1985;(iii) a public authority in consequence of a function under section 49A of the Disability Discrimination Act 1995;(iv) a best value authority in consequence of a function under section 3 of the Local Government Act 1999; (v) a local authority landlord or registered social landlord in consequence of a function under section 53 of the Housing (Scotland) Act 2001;(vi) a relevant English body or a relevant Welsh body in consequence of a function under section 242 of the National Health Service Act 2006;(vii) a Local Health Board in consequence of a function under section 183 of the National Health Service (Wales) Act 2006;(viii) the Commission or the Office of the Health Professions Adjudicator in consequence of a function under sections 4, 5 or 108 of the Health and Social Care Act 2008;(ix) the regulator or a registered provider in consequence of a function under sections 98, 193 or 196 of the Housing and Regeneration Act 2008;(x) the National Institute for Health Research and Department of Health commissioning programmes;(xi) the National Institute for Health infrastructure organisations including research networks, Research Design Services, Collaborations for Leadership and Applied Health Research and Care, University Research Institutes and groups and other higher education institutions, individual research studies, social care bodies, charities and other not for profit organisations; or(xii) a public or local authority in Great Britain in consequence of a function conferred under any other enactment for the purposes of monitoring and advising on a policy of that body or authority which affects or may affect persons in the group or monitoring or advising on services provided by that body or authority which are used (or may potentially be used) by those persons.”

[Baroness Thomas of Winchester]

My Lords, the wording of my amendment is taken straight from Statutory Instrument 2678, the Social Security Benefit (Computation of Earnings) Regulations 2009, with the additions of subsections 10 and 11. The reason I have copied the wording of this SI will become clear in a moment.

Old welfare reform hands may find my speech strangely familiar because I have been on this particular soap box since 2006. The amendment is about the way benefits are treated for service user involvement, specifically the unresolved problem of those disabled people on benefits who help with NHS research, public health research and social care research. The unresolved problem is the impact on their benefits of out-of-pocket expenses and, possibly, a small emolument paid by the organising body. Disabled people are asked to take part in research studies in these fields not just as subjects but as active partners in the research process. For many severely disabled people, this activity is the most important thing that they do, as they are uniquely placed to take part and they know that their participation may lead to better outcomes, both in the immediate future and for future generations.

Plans set out in the health Bill require clinical commissioning groups to base decision-making on evidence-based research. However, unless the universal credit rule on the treatment of certain reimbursed expenses as earnings is amended and the application of the notional earnings rule is removed, disabled people on benefits will continue to be prevented from offering their assistance. Research in health and social care will be used to commission our future healthcare but, as matters stand, two nonsensical bits of red tape in the benefits system will prevent the involvement of many patients. The two obstructive benefit rules were designed for employment and are entirely inappropriate for involvement. The first is the treatment of reimbursed expenses for involvement in research.

At this point, I should define what I mean by research. I am not talking about patients who are entered into clinical trials as part of their treatment. I am talking about those who, in the words of the relevant HMRC circular, are,

“invited to attend meetings to give their views on various matters to inform the research process and direction”.

Where people are paid a small fee for their help with this research and their expenses are reimbursed by the organising body, both amounts are totalled and treated as earnings. Where the total is above the benefit-earnings disregard, the excess is deducted from their benefits. This is because, as I said, the reimbursement of out-of-pocket expenses is treated as earnings. People may end up with less money the following week or with no money at all for living costs for several weeks. If this happens, they promptly and understandably withdraw their help.

--- Later in debate ---

[Lord Freud]

My Lords, I will look at it, but I am not sure I need to study it very hard. As I understand it, the fear of that individual is that if they earn too much money they get taken off their benefit structure entirely. Because they are earning too much, they are outside the disability benefit structure and they must therefore get on another one and they then have a terrible problem. That does not apply under the universal credit. The worst that could happen is that the universal credit goes down in the period, reflecting the emolument, but they are better off overall. That acute fear of being left stranded goes. In that particular case, and many others like it, the desperate cliff-edge position which currently exists is not there under universal credit.

[Baroness Thomas of Winchester]

I thank the noble Lord, Lord McKenzie, for his support, as does my noble friend Lady Wilkins. I would like to take up my noble friend’s offer of a meeting before the Bill reaches the next stage, because we were told specifically by the officials of the noble Lord, Lord McKenzie, when he was Minister, that they could not extend this to bona fide NHS research—nothing to do with commercial interests—unless there was a peg in legislation on which to hang the regulations. I therefore do not accept my noble friend’s statement that everything can be done by regulations, because we found that this particular matter could not be done. We are not talking about people who can get a job; we are talking about severely disabled people, who are a million miles from the job market, but they have specific conditions which are needed for vital research. I hope this can be sorted out before the Bill goes any further. We need this peg, and it is not too late to put it in this Bill. I will take up the offer of a meeting, which I have done on many occasions when I have withdrawn this sort of amendment—and, of course, it finally bore fruit.

[Lord Freud]

We do not need a legislative peg in primary legislation to make changes here. That was a reference to NHS legislation. How we define and work through the different types of income is something which we are going to do in regulation. I can assure my noble friend that, although this is something which is slightly complicated to do, it does not have the desperate urgency that requires it to be done in the next couple of weeks.

[Baroness Thomas of Winchester]

I am caught between two pieces of advice: one is that we do need legislation and one is that we do not. I am somewhat conflicted, and I would like to get this sorted out before Third Reading. We have been told that for the rules that I read out from the statutory instrument, there was a peg on which to hang it, and that is why they were there. We were told that because there is nothing for NHS research we could not extend it. I shall withdraw the amendment now, but hope that we can resolve this before Third Reading, if not Report.

[Lord McKenzie of Luton]

Could the noble Lord arrange to send us copies of the earlier advice, because there is some confusion and I am not clear in my mind?

[Lord Freud]

My Lords, I will have an early meeting with my noble friend on this, and we will take it from there. Subject to that meeting, I will provide that particular advice, otherwise we may go round the houses on this very technical matter. I hope it is one we can resolve pretty fast, with a letter.

[Baroness Thomas of Winchester]

I beg leave to withdraw the amendment.

Amendment 52DA withdrawn.