Category Archives: Westminster

UK Contaminated Blood and Blood Products Inquiry and Meeting

 

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Since Haemophilia Scotland was established we have tried to report back as quickly as possible about all of our activities.  Therefore, we wanted to keep you up to date with developments in the last couple of weeks since the UK Inquiry into the contaminated blood and blood products disaster was announced.

We received a copy of a letter from Diana Johnson MP, Co-Chair of the All Party Group (APPG) on Haemophilia and Contaminated Blood to the Prime Minister which raised three main issues,

  1. That the Department of Health are not the appropriate department for overseeing the establishment of the Inquiry.
  2. The need for clarity on the timetable for establishing the Inquiry.
  3. The need to establish a safe repository for evidence which could be of interest to the Inquiry.

In our reply we supported these calls and provided information from our experience of the Penrose Inquiry to support her.

The Department of Health called a consultation meeting at short notice early in the morning in central London.  The meeting was boycotted by the vast majority of campaign groups including The Haemophilia Society and Haemophilia Wales.  Haemophilia Scotland neither joined the boycott nor attended the meeting.  We are anxious to have a substantive conversation, on the powers and terms of reference of the Inquiry, but is clear that the Department of Health cannot be the responsible Department.

We have had a meeting with the Scottish Infected Blood Forum (SIBF) and agreed to work as closely as possible together with them, and other independent Scottish campaigners.  We hope we can build on the relationships forged following the Penrose Inquiry to have a strong collective voice highlighting the Scottish dimensions to the establishment of the UK Inquiry.

To give everyone affected in Scotland a chance to feed into our collective thinking we are holding a joint members’ meeting at 2pm on Saturday 26th August in the Lomond Room of the Edinburgh Park (The Gyle) Premier Inn.  This is a private meeting and so you must register if you want to attend. The meeting will discuss what lessons can be learnt in from the Penrose Inquiry and what we’d like to see in the terms of reference for the UK Inquiry. We have also jointly written to Nicola Sturgeon MSP, First Minister, to ask her to ensure that Scottish Government engage with the Inquiry and urge the UK Government to work with those affected.

We joined a telephone conference call arranged by Diana Johnson MP and Sir Peter Bottomley MP as Co-chairs of the APPG.  The purpose of the call was to hear from the Bishop of Liverpool who offered to act as an intermediary with the Government.   The Bishop made it clear that he did not believe that the Department of Health were the appropriate part of Government to oversee the Inquiry. He also stated that he believed a proper consultation would take about six months. His remarks on timing are in line with the Government’s own guidelines on consultation.

Since the call, and following legal advice, some campaigners, have said they are not happy with this approach. They fear if the Bishop opens a dialogue with the Department of Health that could legitimise their involvement.  Haemophilia Scotland is keen to work with the Bishop to find a way to find an appropriate part of Government to conduct a meaningful consultation.

Both Haemophilia Scotland and the Scottish Infected Blood Forum have approached Patrick McGuire at Thompsons Solicitors about continuing to represent us and he has agreed.  Patrick and Thompsons bring the experience of having won a judicial review and secured a Public Inquiry and then representing the patient interest during it.  It is our hope that Thompsons will be included on equal terms with any law firms working on group actions.

Finally, the Scottish Contaminated Blood Memorial Fund is continuing to raise funds for a lasting memorial to remember those affected by the disaster.  Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate ten pounds your text should read “CBME23 £10”.

Further Information

The House of Commons Library has produced two briefing papers on Public Inquiries which will help anyone who would like to understand the various options in more detail.

UK Govt. announce Contaminated Blood Inquiry

Theresa May

Yesterday, the Prime Minister, Theresa May announced she would be holding a public inquiry into the contaminated blood disaster.

We’d like to congratulate everyone who has worked so hard over many decades to achieve this.  We know from our own experience of the Penrose Inquiry that there is a lot of hard work still to do but securing an Inquiry is a huge achievement.

Our Chairman, Bill Wright, has written to the Prime Minister today asking for clarification about the scope and remit of her Inquiry and how those affected in Scotland will be involved. We know that the Scottish Government are also seeking their own urgent clarifications.  A statutory inquiry would require the UK and Scottish Governments to work together but so far no discussions about achieving this have taken place.

In his letter Bill highlighted areas which were either not covered by the Penrose Inquiry or not covered is sufficient detail.  These are areas where the new inquiry might make a significant contribution to providing justice for people in Scotland.  There are lessons to be learnt from the experience of the Penrose Inquiry which must be considered to make the Prime Minister’s inquiry as effective as possible.

Meanwhile, Haemophilia Scotland will remain focused and committed to working for the continually improvement of the Scottish Infected Blood Support Scheme and to playing an active part in the Scottish Clinical Review Group chaired by Prof David Goldberg.

More information

Take part in the UK Government review of Personal Independence Payment (PIP)

DWP Department for Work and Pensions government

The Department of Work and Pensions (DWP) of the UK Government has launched a call for evidence for a review it is conducting into the Personal Independence Payment, known as PIP.  Some members have told us that they have had problems with this benefit so we think it is important that people with bleeding disorders take part in the review.  This is one of the benefits which will be becoming the responsibility of the Scottish Government so it is important we have a good understanding of it’s weaknesses so we can lobby both Governments for improvements.

The DWP want to hear from both organisations and individuals who have information about how all aspects of the PIP process and assessment are operating.Complete our PIP Survey  If you would like to make your own submission the deadline is 5pm on the 16th September 2016.  You may find it quicker and simpler to complete our short survey which we will use to inform our submission.

On a related topic, we believe that many people with bleeding disorders in Scotland are not claiming all the benefits they are entitled to.  Although many of the Haemophilia Centres can refer people for benefits advice already, we are looking at ways to make advice easier to access and more closely related to bleeding disorders.  If you’d be interested in being kept informed about this please complete the contact form below.

Scottish Government timetable for #ContaminatedBlood financial support payments

Applecross Pass

The road to improved financial support payments has already been long and winding.

Last week, those who represented the patient point of view during the financial support review group met with Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport.  Several of us had been raising serious concerns about the fact that the new payments, announced in March, have not started yet.  Many Haemophilia Scotland members are in urgent need of this additional support. Every day of delay causes additional stress and anxiety.

At the meeting we were told that different groups can expect payments at different times.  If you are currently receiving a payment then the increase is estimated to come in October 2016. However, this timetable is subject to the issues set out below.  For example, the boards of the UK-wide bodies have not yet agreed to this timetable.

Those who will get a new support payment will have to wait until the new Scottish scheme is set up in April 2017.

Following the meeting, the Scottish Government have produced this short paper which details the expected timetable and gives more information.

Payments expected in October 2016 (backdated to April 2016 where applicable)

  • Stage 1 payment to increase from £20,000 to £50,000 (an additional £30,000 for those already in the scheme).
  • Stage 2 payments to increase from £14,749 to £27,000.
  • HIV payment to increase from to £27,000
  • Co-infected payment to increase from £14,749 £29,498 to £37,000

Payments to be start with the new scheme in April 2017 (not backdated)

  • Widow(er)s’ pensions
  • The new Scottish discretionary grants.  This will replace the Caxton Foundation and the discretionary element of the MacFarlane Trust (MFT). It will honour existing commitments from these successor organisations.

After April 2017 payments will be made from Scotland.  The scheme is likely to be administered by National Services Scotland (NSS) which is effectively an all Scotland NHS Health Board.  There will be an advisory group including stakeholders but other governance arrangements aren’t clear yet.

Issues to be overcome before October 2016

Before the UK schemes can be used to make the new Scottish payments there are some hurdles to be overcome.  These are what are causing the current delays.

  • Westminster must pass Tax Orders so that none of the payments are liable for tax.  This has to happen whichever mechanism is used to make the new payments.
  • To use the existing scheme to make the new payments all four nations of the UK must agree.  At the moment only Scotland is signed up.  We have asked all three of the other Government not to stand in the way of Scottish payments and have had these replies from England and Wales.  There have also been two stories in The Sunday Herald to put pressure on England in particular.
  • For the payments to be made in October there must also be agreement from the Boards of the UK-wide schemes.

Issues to be overcome before April 2017

Before the Scottish scheme is established there are some important decision to be taken including,

  • Changes to the threshold for receiving ongoing support.  The threshold is to depend on whole health impact of infection rather than focusing on liver damage alone.
  • A reexamination of the ability of those with incomplete medical records to apply.
  • An appeals procedure for those who think they should be in the Scottish scheme.
  • A procedure for converting ongoing payments into a lump sum settlement.
  • How the new discretionary scheme will operate in practice.

Groups will be established shortly to look at these points.

This article was amended on 19 August 2016 following a request from the Scottish Government make it clearer that at the time of publication none of the boards of the UK-wide bodies had given formal agreement to implement the new Scottish payments.

NOhep Day 2016

Dan Farthing-Sykes, Jeff Frew, Robert Girvan, Sam Baker, Shona Robison MSP, Petra Wright. Credit: Petra Wright, Hep C Trust.

UK Govt. issues its #ContaminatedBlood consultation response

English Consultation Response

The UK Government has just responded to their consultation on proposed changes to the contaminated blood financial support payments available to people who were infected in England. The proposals will affect at least 25 people living in Scotland who were infected in the rest of the UK.

The uncertainty around the English proposals is one of the issues which has slowing the progress of those negotiations. We hope that the announcement means that a deal to make the Scottish payments can now be signed as a matter of urgency.

Haemophilia Scotland are now analysing the English payments to see how they compare with those announced by the Scottish Government. We will comment in more detail in due course.  Initially, there appears the largest difference is in the treatment of widows.  The Scottish scheme will include a life-long pension for those who have lost a partner to the infections. The English scheme only includes a one off payment of £10,000.  Those with the most advanced health damage from Hepatitis C also appear to be much better off under the Scottish proposals.

 

 

Jane Ellison MP’s latest #contaminatedblood letter

Jane Ellison Letter

In early June, Haemophilia Scotland wrote to Jeremy Hunt MP and Jane Ellison MP a the Ministers with responsibility for the Department of Health (England) response to the contaminated blood disaster.

We pointed out that, without a backdated deal to use the Alliance House organisations to make the new Scottish payments, a Scottish infected person in Stage 2 could be losing about £230 a week.  We stressed the need for these payment is urgent and urged them make finalising a deal with the Scottish Government a top priority.

In her reply, Jane Ellison MP says,

There are various ways in which the Scottish Government can make these payments,

We believe this is a reference to the option of moving straight to establishing a stand alone Scottish scheme.  Our fear has always been that this would take even longer.  However, the Scottish Government have said they will make a decision about how the new Scottish scheme will be established this summer so it can be up and running in 2017.  This clearly now needs to be completed as quickly as possible.

Jane Ellison MP also says,

…any change to scheme documentation requires agreement from all four UK Health Departments.

We are working with our friends at The Haemophilia Society and Haemophilia Wales to make a joint approach to the Welsh Government and the Northern Ireland Government to ask the to do what they can to expedite the process.

Contaminated Blood Update from the Scottish Government

Screen Shot 2016-06-24 at 14.18.21

As soon as Shona Robison MSP was reappointed as Cabinet Secretary for Health, Wellbeing, and Sport, we wrote to her asking about progress on implementing the new contaminated blood support payments for Scotland and other recommendations. We have just received a reply which gives details about the current situation.

You can read her letter in full here.

In summary her letter says,

  • The Scottish Government is negotiating with the UK Government to use the current, UK-wide, schemes (such as the Skipton Fund and MFT) to make the new payments without having to wait for the new Scottish scheme to be set up.  Until the negotiations are finished they can’t say when they payments will start.
  • They are also working to ensure the payments are treated fairly for tax and benefit purposes.
  • Their is an issue about being able to backdate some of the new payments without them being liable for income tax.
  • A decision on how the new Scottish scheme will be delivered will be taken over the summer and it will be up and running in 2017.
  • The clinical review group, which will look at the eligibility criteria for the schemes ,including access to ongoing payments and the widow’s pension, will be set up once the interim arrangement are up an running.  As well as clinicians it will include lay people and academics.
  • Work on being able to convert an entitlement to a lump sum will start as soon as possible.
  • The Penrose Short Life Working Group is working on how to trace and offering testing to people who may not know they were infected.  The Scottish Government are expecting to receive their report soon.

We are hoping to meet the Scottish Government as soon as possible to discuss these issues.  We have also written to the Department of Health (England) and several Scottish MPs calling for the negotiations to be concluded quickly so that people can start receiving the new payments as soon as possible. We are hoping to travel to London to reinforce this point.

Shona Robison in the Scottish Parliament

26 Mar 2015, Edinburgh, Scotland, UK — Edinburgh, United Kingdom. 26th March 2015 — Scottish Cabinet Secretary for Health Shona Robison makes a ministerial statement in the Scottish Parliament after the publication of the Penrose Inquiry on the contaminated blood scandal. — Scottish Health Secretary Shona Robison in a ministerial statement on the Penrose Inquiry into NHS patients being infected with Hepatitis C and HIV through contaminated blood in the 70s and 80s, has promised continued support for victims. — Image by © Ken Jack/Demotix/Corbis

 

 

 

 

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