Category Archives: Westminster

Joint statement ahead of meeting with Bishop James Jones

Today, representatives of both Haemophilia Scotland and the Scottish Infected Blood Forum will be in London to attend a meeting between people affected by contaminated blood and blood products and the former Bishop of Liverpool, James Jones.  We will be expressing the views of our members from our recent joint campaign meeting and have jointly issued the short statement below.

In our united view, the UK Public Inquiry should be a statutory Inquiry under the 2005 Inquiries Act. It should be conducted by a panel rather than a Chair and they should be appointed as soon as possible with appropriate input from affected people. The wrong Chair and Panel is worse than no Chair and Panel. There must be Scottish Core Participants and Scottish legal representation.

We want people to make their own decision about whether or not to attend the meeting with the Bishop. The Scottish charities are attending because we want to take opportunities to engage and put forward the Scottish perspective. Therefore, we are not boycott the meeting or planning to walk out of it. We take the Bishop at his word and believe him when he is says that he is making a genuine attempt to help.

Haemophilia Scotland and the Scottish Infected Blood Forum are both currently working with Thompsons Solicitors.

We continue to call for the Department of Health to step aside in favour of another Department taking the lead establishing a UK Inquiry.

Meeting Bishop James Jones in London

Kings-Cross-Square.jpgThank you for everyone who came to our joint campaign meeting with the Scottish Infected Blood Forum (SIBF) on Saturday.  It was an extremely interesting and informative debate.  We will post a report from the meeting for those who couldn’t be there as soon as possible.

One piece of feedback we’ve had was that people would like to know more about the upcoming meeting with Bishop James Jones.  All the information we currently have about  is detailed below.  Bill Wright and Dan Farthing-Sykes will be attending on behalf of Haemophilia Scotland and look forward to seeing anyone else who is able to attend.

Who

Bishop James Jones, former Bishop of Liverpool is Chairing a meeting of the affected communities and their representatives. The meeting is being supported and promoted by the All Party Parliamentary Group on Haemophilia and Contaminated Blood. No representatives of the Government will be present at the meeting.

When

12th September 2017. Refreshments will be available from 11:30am and the meeting will start at 12:30.  There will be a break in the middle of the meeting which will finish at 3:00pm.  The Bishop will be available informally for a short time afterwards.

Where

BMA House, Tavistock Square, London, WC1H 9JP.

What

The Bishop has agreed that the purpose of the meeting is:

  1. To assist the Community in communicating to the Government their concerns with the process for setting up the Public Inquiry, (e.g. The Department of Health cannot be the sponsoring department);
  2. To assist the Community in discussing how they would want to be involved in drawing up the Terms of Reference;
  3. To assist the Community in communicating to the Government their own understanding of the next steps that need to be taken to set up the Inquiry.

Registration

Anyone who wants to attend should register in advance by emailing Diana Johnson MP on JOHNSOND@parliament.uk. The deadline for registration is the 5th September.

Travel Costs

Receipted, reasonable travel expenses will be met by the UK Government.  Further information on how to reclaim travel costs following the meeting. The UK Government is, however, not able to cover accommodation costs.

We are grateful to The Haemophilia Society who are involved in organising this meeting and provided this information in their capacity as the Secretariat to the APPG on Haemophilia and Contaminated Blood.

UK Contaminated Blood and Blood Products Inquiry and Meeting

 

britain

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.

 

 

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