Category Archives: Scottish Government

Contaminated Blood Update from the Scottish Government

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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

 

 

 

 

Who will be the Cab Sec for Health, Wellbeing, and Sport?

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

The position of Cabinet Secretary for Health, Welling, and Sport is vital for people with bleeding disorders in Scotland.  We’ve been fortunate that in recent years we’ve had a succession of people in that position  who have taken a particular interest in bleeding disorders and the contaminated blood disaster including Nicola Sturgeon MSP, Alex Neil MSP, and most recently Shona Robison MSP.

Just before the Scottish Parliament election the Scottish Government announced that they would be implementing the recommendations of the Financial Support Review Group and increasing payments to those affected by the contaminated blood disaster.  We don’t yet know if Shona Robison will continue as Cabinet Secretary.  However, whoever is in that job we are expecting an early announcement about how and when the new payments will be made and if they will be backdated to the beginning of the financial year. We are also keen to begin the review of eligibility criteria and to establish a mechanism for exchanging on-going payments for a lump sum as a matter of urgency.

A new Scottish Government has to be formed within 28 days of the 5 May election (2 June).  The First Minister will take office after being nominated by the Scottish Parliament and appointed by the Queen. Scottish Ministers, including for Health, Wellbeing, and Sport can then be named.

Scottish Govt. will implement Scottish Contaminated Blood Support recommendations

Scots Health Secretary promises action on NHS infected blood scandal

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

The Scottish Government has just announced that it has accepted the key financial recommendations of the independent Financial Review group at an estimated cost of £20million.

The recommendations were co-developed as part of a Scottish review process.  Details of that process and the recommendations made by the group can are available here.

Responding to the news our Chair, Bill Wright, has said,

This announcement is a watershed moment for everyone involved in this long running campaign. There are three key elements of the announcement which are particularly welcome.

Bill takes a standFirstly, the increase in ongoing support for those who are most unwell means that we can have some confidence that they will no longer be living in poverty as a result of their infections.

Secondly, introducing pensions for widows and widowers is an important recognition that they suffered losses in their own right and that they should have a secure future.

Thirdly, the upfront payment of an additional £30,000 to all those who will not receive ongoing support goes some way towards recognising that everyone who has lived with these infections has suffered physically, mentally, or financially. We will be continuing to work very hard on their behalf to ensure that they benefit as much as possible from the new scheme and the review of the debilitating physical and mental health conditions they have developed.

No scheme can truly make up for the loss of life, and health, caused by this disaster. The Cabinet Secretary has acknowledged that there is more that to be done once these schemes move to Scotland. However, today, we have made historic progress.

This new, Scottish, approach stands in stark contrast to the deeply concerning proposals currently being consulted on for the rest of the UK.

We are grateful to everyone who has contributed to making this very real progress in Scotland.

We appreciate that a lot of people reading this news today will be from other parts of the UK.  You can find out more about the English led review and campaign responses to it at these website.

Scottish Government backs our Malawi Diagnosis Project

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We are delighted to have been successful in the latest round of the Scottish Government’s Small Grants Programme.  We will be receiving funding for a volunteer led diagnosis project in partnership with our friends in the Haemophilia and Allied Bleeding Disorders Society in Malawi.

The aim of the project is to facilitate access to appropriate treatment for bleeding disorders in Malawi following a laboratory diagnosis.  If the project is successful, more people with a potential bleeding disorder in Malawi will be aware of where they can go for a diagnosis and treatment, and more will have a laboratory diagnosis of their condition and have that diagnosis recorded on a National Haemophilia Register. However most importantly, more people will have access to specialist Haemophilia care and treatment.

Securing funding for the project has been made possible by the work of some dedicated Haemophilia Scotland volunteers, including everyone who took part in our Walk RED Malawi fundraiser last year (watch this space for information about this year’s event).  To make the project a success we will need to continue raising money with events like this.  The text donate details for supporting this project have changed.  To donate just text MALA31 to 70070.

Announcing the grant, Humza Yousaf MSP, Scottish Government Minister for Europe and International Development, said,

The Scottish Government’s Small Grants Programme helps some of the world’s most vulnerable people. It also provides support to Scottish organisations to help them continue to be good global citizens.

Chair, Network of International Development Organisation of Scotland (NIDOS), Jamie Morrison, said,

Small organisations are often uniquely well placed to respond to distinct community needs, and the recognition of their valuable contribution to poverty alleviation and economic growth is warmly welcomed.

A public consultation to help shape Scotland’s International Development Fund in the future is currently underway and will run until 20th May 2016. A number of public discussion events are also taking place across Scotland – event details can be found here.

 

Bill Wright is speaking to the Health and Sport Committee tomorrow morning

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Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

The Scottish Parliament’s Health and Sport Committee has invited our Chair, Bill Wright, to give evidence to them tomorrow morning from 9.30am in Committee Room 1. The Committee are looking at “Penrose Inquiry Report – Progress Update.”  It has been almost a year since the Penrose Inquiry Final Report was published, so now is a good time to look back and consider what has been achieved so far.

Bill will be giving evidence as part of a panel including The Hepatitis C Trust and the Scottish Infected Blood Forum.  All three organisations have submitted written evidence in advance which you can read on the Scottish Parliament website.  Bill is hoping to be able to stress the urgency of getting new financial arrangements up and running as quickly as possible.

It is also likely that the Committee will consider the work of the Scottish Financial Support Review Group.  You can still find all the minutes from those meetings, as well as the recommendations to the Scottish Government, on our website.

Later in the day, the Committee will also speak to Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport, and Professor Goldberg.  He is leading the Penrose Inquiry Short Life Working Group on implementing the Penrose Report’s sole recommendation.

If you’d like to watch what happens live, it will be covered by www.scottishparliament.tv, just click on Committee Room 1 at 9.30am.

 

 

Department of Health (England) letter causes confusion

The National

At the end of last week our members started receiving letters from the Department of Health (England) inviting them to take part in their consultation on their proposals for changes to the contaminated blood financial support scheme for England.  The story is covered in today’s edition of The National,

The letters were extremely confusing because they made no reference to the fact these decisions are responsibility of the Scottish Government or that work towards reforming the schemes is much more advanced north of the border.

Many of our members were also concerned that the Department of Health (England) proposals, widely regarded as cuts and inferior to the Scottish proposals, would be forced on Scotland.

We have now received this official clarification of the position,

This is a public consultation to which anyone with an interest can respond. However, the proposals for reform and the additional money committed by the Department of Health are for those infected in England.

The Department of Health’s consultation is separate from the Scottish government’s process to review financial support arrangements in Scotland. It will be for the Scottish Government to decide on what support arrangements are most appropriate for Scotland.

The Department of Health will continue to collaborate with their opposite numbers in the devolved administrations to align as far as possible and ensure the best possible outcomes for those affected.

The Department of Health will analyse its consultation responses geographically as far as possible, and results will be shared with all the UK Health Departments.

The Scottish Government has remained committed to its considerations of the proposals from the Scottish Financial Support Review Group and to making an announcement before 17 April (World Haemophilia Day) this year.

If you were infected in England then it is likely that the results of the Department of Health (England) consultation will affect you, and you may wish to take part in the consultation.  If you don’t know where you were infected then you need to work out where you were first given a pooled plasma blood product.

The Caxton Foundation have helpfully produced two documents to help people understand the Department of Health (England) proposals,

The attitudes of campaigners in England to the consultation range from putting in strong submissions opposing the proposals through to those who are boycotting the process in favour of pursuing legal alternatives.  Similarly in Scotland some take the view that it is a matter for campaigners in England but others are keen to complete the questionnaire, even though it is only applicable in England.

Scottish Recommendations on Contaminated Blood finances must be implemented

Recommendations Report

Today, the Contaminated Blood: Scottish Financial Support Review Group formally submitted its Conclusions and Recommendations  to Shona Robinson MSP, Cabinet Secretary for Health, Wellbeing, and Sport.

Commenting on behalf of the Haemophilia Scotland our Chair, Bill Wright, said,

The report, produced by patient representatives working with government, marks a major milestone. After decades of loss, pain, illness and grief, we are finally making significant progress in Scotland, in contrast to the rest of the UK, where no extra money is yet on offer. While discussions were at times tense, the result is all affected should soon be significantly better off financially.

“Those left with life threatening conditions or widow/ers are those who have been most impacted. Urgency is needed to ensure they are not delayed. People must benefit from the proposed new arrangements before there are further deaths. Patient reps, government and clinicians now need to get onto working through how the new Scottish scheme can maximize all possible benefits to all individuals affected.

Important links

Contaminated Blood Financial Review Group Consultation Meetings announced – SHORT NOTICE

Consultation

As you may know, Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport has set up a Financial Support Review Group to look at how the Scottish Government can best provide financial support to people affected by the Scottish Contaminated Blood Disaster.  You can read the note of the first meeting on our website.

At the July meeting it was agreed that the Group needed to urgently hear from as many of the people who are directly affected as possible.  In particular, to find out about what the principals behind any financial arrangement should be and what mechanisms would be most appropriate.  Time is very short as the Group wanted to have the early results from any consultation in time for the September meeting and to make sure that the was no delay in making a recommendation.

There will several ways of getting your views to the group.  You can choice to use any or all of them.

  1. A questionnaire.  This will be circulated asking for your views.  Although there will be set questions there will also be a lot of free text boxes so you can say exactly what you think.  You will be able to complete the survey online or in hard copy.
  2. Regional Meetings. There will be meetings in Edinburgh, Inverness, Dundee, Glasgow, and Aberdeen.  See below for the details.  This is so that people who don’t want to do the questionnaire, or have questions, or who just want to talk through the issues, can take part.  All the meetings will start at 6pm.  You can attend any of the meetings.
  3. One to one conversations. If you’d prefer just to talk to someone then that can be arranged to. In the first instance please contact Dan in the office.

A formal letter from Ian Welsh, who is the independent Chair of the Group, is about to be sent out with the questionnaire and explaining things in more detail.  However, because the first of the consultation meetings is only next week, we wanted to start promoting them straight away.  We are sorry we haven’t been able to give you more notice of the meetings.  However, everyone on the Group is conscious that there are many people whose financial situation means that this process is extremely urgent and has to be taken forward as quickly as possible.  We are determined to work with you to make sure everyone’s views are collected.

REGIONAL MEETINGS

Edinburgh – Wed 19th August
Premier Inn Edinburgh Park
Lomond Room
1 Lochside Court
Edinburgh
EH12 9FX

There is free parking and the hotel is right next to Edinburgh Park Station and Tram Stop. It is also on the 2, 20, or 63 bus route.
Outside the city centre because of the Festival and Fringe.

Inverness – Mon, 24th August
The Place Hotel
The Ness Suite
8 Ness Walk
Inverness
Inverness-shire
IV3 5NG

Free Parking and on the ground floor.

Dundee Tues, 25th August
The Apex Hotel
Melbourne Room,
1 West Victoria Dock Road
Dundee
DD1 3JP

Free Parking and lift access to the room.

Glasgow Wed 26th August
The Central Hotel
The Clyde Suite
99 Gordon Street
Glasgow
G1 3SF

In Glasgow Central Station. There is an arrangement to validate a day parking ticket from the St Oswald Street NCP Car Park making it £5.

Aberdeen Thu 27th August
Juries Inn
Glen Grant Room
Union Square
Guild Street
Aberdeen
AB11 5RG

By Aberdeen Station and the Union Square shopping centre.

New research shows the patient voice is key when buying clotting factor products

IMG_0359Today, patient representatives from all over Europe gathered in Dublin for a prestigious event to mark World Haemophilia Day.

The European Haemophilia Consortium shared exciting new data on the value of patient and clinical involvement in the procurement of clotting factor products.  A recent pan-European survey not only found that conducting a national tender lowered prices but, strikingly, that tenders where patients and clinicians took leading rolls achieved the best value of all.

The meeting also learned that the adoption of a new EU Directive on procurement (2014/24/EU) and the licensing of new, longer acting products, means that tender criteria in many countries will have to be rewritten. This provides a fantastic opportunity for countries who run tenders to formally include patients and clinicians on their tendering boards.

Clotting factor procurement is a matter for the Scottish Government.  However, for the last three tenders Scotland has purchased products as part of a UK tender.  Haemophilia Scotland is calling for Scottish patients to have a formal role in the procurement process. The Scottish Government has already announced that it will establish a National Haemophilia Committee in Scotland (to be known as the National Managed Clinical Network for Inherited Bleeding Disorders). That will give patients a voice in decisions about how Haemophilia Services in Scotland are delivered. We believe that the Scottish patient voice must be heard when procurement decisions are made as well.

The Penrose Report revealed that English patients had access to products which didn’t transmit Hepatitis C much earlier than in Scotland.  We believe that decisions like that wouldn’t happened if Scottish patients were properly involved. Putting Scottish patients at the heart of the procurement process is an important lesson from the findings of the Penrose Inquiry.

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Taking your thoughts on the Reference Group to the Scottish Government

Susan, Dan and Bill after meeting with officials from the Scottish Government.

Susan, Dan and Bill outside St Andrew’s House after meeting officials from the Scottish Government .

We are very grateful to everyone who has taken the time to get in touch about their hopes for the reference group announced by the Cabinet Secretary, Shona Robison MSP, last week. There have been some excellent and well thought through contributions. Some common themes have come through load and clear.

You have told us that,

  • proper financial support should be the top priority.
  • speed is very important, there should be no unnecessary delay.
  • that the group should be small enough to be as efficient as possible.
  • it is important that ALL those affected by the disaster have a chance to take part.
  • that the needs of those who are very ill and those who have lost loved ones are not forgotten.
  • access to the new treatments for Hepatitis C is important.

Bill Wright, Susan Warren and Dan Farthing-Sykes met with the Scottish Government yesterday to discuss how this might work in practice. We talked about the possibility of having two groups. One that engaged as widely as possible in the community and made sure that the changes work for everyone.  You shouldn’t need to be someone who is good in committees and meetings to have your say. The other group could have an independent Chair and be very focused on working through the fine details of any scheme.  It should include people with a wide range of experiences of the disaster. The new financial support arrangements would be the top priority for this group. The Scottish Government were clear that there is the political will in Scotland to take action and that they understand the need for urgency.

We spoke to Philip Dolan of the Scottish Infected Blood Forum straight after the meeting. Both organisations are committed to working as closely as possible and making progress as quickly as possible. We will be keeping each other well informed throughout this process.  We are also working closely with the key individual campaigners.  We think it is very important we all work together to get this right.

We will keep you updated at every step of the way on this website.  Please let us know if you disagree with anything or have any ideas you’d like us to take up.

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