Benefits and Blighted Blood – Welfare Reforms

‘Stage 1’ Widows
25th March 2018
Joint member meeting – Saturday 21st April
27th March 2018

“Please Sir, Can I Have Some More”

Welfare benefits are an entitlement available to all citizens – when there is a need. And like the previous sentence, the sting is in the tail, because in relation to benefits, some of the big questions are:

  • How do you define what counts as ‘need’?
  • What are the appropriate thresholds that allow these benefits to kick in?
  • How do you measure entitlement to benefits e.g. by assessments, or means testing? and
  • What is a fair level for these payments?

A disproportionate number of people infected and affected by contaminated NHS blood are forced to rely on welfare benefits – either as an essential income top-up or a single safety net to avoid abject poverty. For this reason the topic of benefits is of great interest to many SIBF members.

Thankfully, state-infected people make up only a tiny minority of the overall group of benefit recipients. But the lesser statistical significance can result in lesser actual awareness of the specific and unique issues faced by people who are saddled with deadly viral infections; made worse by the chronic effects of past treatments. As a relatively small Scottish charity, the Scottish Infected Blood Forum (SIBF) is in competition with much larger and more resourced advocacy organisations in trying to gain the attention of policy-makers to address the plight of infected/affected people in terms of access to benefits.

Welfare Reform (Sounds Innocent Enough)

We know because we talk to each other about it, that the current programme of Welfare Reforms might more honestly be called Welfare Cuts, since that is certainly the experience of many members. For example, the move from Disability Living Allowance (DLA) to Personal Independence Payments (PIP) has not been a helpful reform for the majority of contaminated blood victim/survivors. It is almost unknown for “reassessments” to result in infected people continuing to receive this vital support, or at least not at the same level. Yet the UK Government (where the control of benefits policy currently remains as a “reserved” matter) continues to spout figures that make it sound like “we’ve never had it so good”. So what is being done to address this issue?

The APPG and the DWP

In 2017 the All Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood in Westminster were successful in getting the Department for Work and Pensions (DWP) to agree to set up a high-level Working Group. The remit was to look at the issues around disability-related benefits for:

  • People with bleeding disorders
  • People with bleeding disorders who have been infected and affected with a virus or viruses through their NHS treatment with blood products, and
  • People from the wider population who have been infected and affected with a virus or viruses through their NHS treatment with whole blood (e.g. transfusions).

This Working Group has since been set up. The particular disability benefits being looked at are PIP and Employment and Support Allowance (ESA).

Personal Independence Payments

PIP is meant to help people maintain their independence despite having limited capacities due to health factors. If an assessment results in a judgement that the applicant is eligible, it is paid out regardless of whether that person is in work or not (at least that is what it says on the tin). It does not involve a “medical” assessment in relation to what health conditions a person has, rather the focus is on identifying their “capacity” to perform a number of set tasks associated with living independently. It covers both daily living and mobility dimensions.

Employment and Support Allowance

This is the benefit for unemployed people whose health situation stops them from being normally available for work. If there are no health factors then it is simply a case of applying for Jobseekers’ Allowance (JSA); which is fast moving to Universal Credit (UC, of course). Access to ESA is also dependent on a Work Capacity Assessment (they don’t think it is helpful to call it a medical assessment either). If a person is deemed to be eligible for ESA they will either be placed in the “Work Group”, meaning they need to participate in activities to move towards getting a job suitable to any presenting health issues, or the “Support Group”, meaning that the person’s capacity is such that there is no real prospect of them currently being able to gain employment because their limitations are so profound.

How the SIBF is Influencing These Developments?

Through our advocacy efforts, the SIBF has been recognised as having a valuable contribution to make in the area of benefits policy. We are represented on the UK Working Group which involves attending meetings with senior DWP officials in Caxton House (yes, that Caxton) in London, just along the road from the Houses of Parliament. Also in attendance are other representatives and campaigners from groups with a common interest in the State’s support of its bleeding disorder and contaminated blood citizens. You can be sure that the Scottish experience, perspective and voice has been heard, but with an appropriate level of professionalism and informed influence.

Currently the business of the Working Group includes:

  • Identifying case studies of unsuccessful applications to PIP or transitions from DLA to PIP from among our memberships
  • Preparing specific training materials in relation to our unique circumstances aimed at those “health professionals” who carry out the assessments, including checking the materials with clinicians who actually treat patients in our situations
  • Recognising how ESA is currently “a bit better” at capturing our type of issues compared to PIP, and so transferring that practice to the PIP process
  • Ensuring that the processes for disregarding scheme payments when calculating eligibility to benefits are understood and applied at the local Jobcentre office levels, including carrying that through to widows.

At the next meeting the Minister of State for Disabled People, Health and Work, Sarah Newton MP, is expected to attend. This will allow the Working Group to discuss matters beyond the competence of civil servants who are properly limited to implementing policies and laws, not making them.

National PIP Forum

In acknowledgement of the usefulness of the SIBF contributions to the DWP Working Group on bleeding disorders and contaminated blood, an invitation has been extended for the SIBF to be a participant in the National PIP Forum. This is a broader setting for all types of groups and organisations to meet with those in Government who design and shape the way benefits are delivered. Attendees include representatives of organisations with a focus on a range of disabilities, on poverty reduction, on exclusion due to criminality, on advice services, on mental health conditions, on housing issues, and many more.

So you can be assured that the needs and concerns of SIBF members in relation to benefits are being raised at the highest levels and with those who are in positions of power to make changes. For those who would like to contribute to this work then the best way is to invite your MP to join the APPG. If you want to do this, help is available in making the invitation, and someone can even go with you if you want to make the invitation in person at a local surgery.

Scotland’s Benefits Takeover

If you thought the SIBF could not be doing any more in the area of benefits support for members, then think again. As part of the agreement between Westminster and Holyrood to strengthen devolution further, the Smith Commission recommended that Scotland have more control over certain welfare benefits. Over the next few years the Scottish Government will take control of a number of benefits and have the power to make changes to suit the Scottish context. These are mainly the very disability benefits already discussed; ESA, PIP and some others.

In preparation for that major shift in responsibility from South to North, the Scottish Government has set up a process to prepare to take over this important role, and to do so by making every effort to get it right from the start (a lofty and worthy aspiration, indeed). Words such as “dignity” and “fairness” are peppering the debates in the Holyrood Chamber and the conversations in the corridors. On a more pragmatic front, a programme of community engagement has begun to ask those citizens who have lived (survived in some cases) the current benefits system as administered centrally from London.

“Experience Panels”

The SIBF has been participating in what are called “Experience Panels”. This effort is led by a team of seemingly very earnest and friendly (and listening) researchers and Scottish Government officials. To properly maintain the integrity of the research exercise it is not appropriate to go into detail about who attends and what people talk about, but it is fair to say that there is an appetite to do things differently (better) by removing the aspects that are barriers to people being treated with dignity and fairness, but also recognising what works and is worth keeping.

For SIBF there has been involvement in various aspects of the prospective Scottish version of the benefits system through these Experience Panels, including:

  • Identifying the pros and cons of the current PIP and ESA benefits, including the application and assessment processes
  • The corporate image of the agency that will deliver the benefits regime in Scotland
  • Providing support to people with the costs of funeral expenses when required.

If folks want to find out more themselves about this Scottish focus to development in the benefits system, there are some links below. Some very useful reports have been produced and are worth a read for those with a special interest in this area of social policy.

Watch This Space

This area of Government activity is considered so important to SIBF members that the plan is to provide updates as more information becomes available. This will include specific information on topics such as what the DWP decision-makers consider to be good supporting evidence when applying for disability benefits such as PIP and ESA. If you have any questions which you think someone within SIBF can help you with, please use the usual contact details. Every effort will be made to provide answers, or to signpost you to the appropriate sources of expertise.


(Social Security Experience Panels: About Your Benefits and You – Visual Summary of Focus Groups and Survey Research Findings)

(Social Security Experience Panels – About Your Benefits and You – Qualitative Research Findings)

(Results of the online ‘About You and Your Benefits’ survey)

(Section of the Scottish Government website about developing the new Scottish Social Security system)






1 Comment

  1. Anonymous says:

    That is a really thorough and plainly spoken summary of what is happening, thanks. I only hope the Government is listening with a view to actually doing something about the rank unfairness of the current way benefits for disabled people are provided – or not provided if you know what I mean. I’m looking forward to more on this topic. We definitely need it.

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