Category Archives: Support

Joint meeting with the Scottish Infected Blood Forum (SIBF) a success

John Rice and Bill Wright working together

John Rice and Bill Wright, Chairs of the SIBF and Haemophilia Scotland respectively, joined forces to encourage everyone to register with the Scottish Infected Blood Support Scheme.

 

On 8 April 2017 we held our first every joint meeting with the Scottish Infected Blood Forum (SIBF). The SIBF campaigns on the contaminated blood and blood products disaster, regardless of the route of transmission, in Scotland. We wanted to come together to update members of both organisations on the current situation and give everyone a chance to have their say.

Tommy Leggate from the SIBF provided information about the new Scottish Infected Blood Support Scheme (SIBSS) and some of the work that the SIBF and Haemophilia Scotland have done together in response.

Leone Bissett spoke about the proposal for a memorial to those who had passed on as a consequence of the disaster.  She urged everyone to support the Contaminated Blood Memorial Fund. The memorial will be a lasting tribute to those who died as a consequence of the disaster. The location needs to be accessible preferably in Edinburgh and durable enough to be withstand any possible weathering or other damage. It needs to be physically accessible to all ages and physical capabilities and will include words to explain what happened. Individual names need not appear but there may be ways of including individual messages. The style needs to be clear that it denotes a disaster but is also +ve and forward looking. A budget of £45,000 might be needed and so far £8,500 had been raised. It was agreed that the project had full support of those attending and agreed that the small steering group who had driven the project to date should continue to lead it.

There was then a discussion about what still needs to be done and how the new scheme could be improved. This discussion identified a number of potential issues including,

  • The availability of income top-up support. Grants will be reviewed in Oct.
  • The availability of lower value one-off grants from the support and assistance grant fund.
  • Widow(er)s could choose a nominated doctor to help their case for gaining Stage 2.
  • The term ‘Sustained Viral Response’, rather than cure, is to be applied where new the viral treatments for HCV have been ‘successful’.
  • More case studies were needed to feed into the clinical review. For this, survivors access to their own or loved ones medical records might be necessary.
  • Some concerns / anxieties were expressed about the application process. The first port of call should be NSS. However there was concern expressed about the telephone manner of one NSS response to a query.
  • The phrase on one of the forms ‘if you really need it’ was regarded as insensitive.
  • It was agreed to invite NSS to the next meeting in the autumn.
  • It was noted that ‘Stage 1’ widows in particular were missing out.
  • Concern was also noted about the composition of the Appeals Panel.
  • All agreed that a future guarantee on the level of payments as a minimum is needed. It was agreed to write to all the political parties seeking their agreement to maintain the levels of payments set so far as a minimum.
  • It was noted that Stage 0s may have particular problems in securing access to the scheme due to missing medical records.
  • The issue of the widows pension payments not being made to those who have remarried.
  • The cross border issues caused by the requirement that people were infected in Scotland and lived in Scotland when they first applied for support.

Although not know at the time of the meeting, the BBC were working on a Panorama programme to highlight the impact of the disaster and some of the evidence of wrong doing.  The programme, Contaminated Blood: The Search for the Truth, was aired on 10 May 2017 and can be viewed below. It will be available to view for 12 months if you missed it when it went out.

FREE Cruise on Loch Katrine and AGM – Sat 20 May

SS Walter Scott

There are still places left for our free cruise and AGM on Saturday 20 May.

Register for free online on Eventbrite.

Once everyone has arrived and registered we will have some lunch together (12 noon) before holding our AGM.  At the AGM you’ll hear reports of our activities and find out how we are managing our finances.  It will also be your chance to elect trustees to our board.

Once the AGM is concluded we will all be going on a cruise on the SS Walter Scott out on Loch Katrine (2:30pm).

All members of all ages are very welcome. If you need help with the costs of travel then please get in touch with Dan Farthing-Sykes.

Scottish Government formally announces launch of the Scottish Infected Blood Support Scheme

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Today, the Scottish Government has issued a press release “Support for those affected by infected blood.”

The press release says,

New scheme launches.

The new Scottish Infected Blood Support Scheme is now operational and will make its first payments to beneficiaries this month.

The scheme, managed by NHS National Services Scotland (NSS), has taken over this role from the existing UK support schemes as a result of the recommendations made by the independent Scottish Financial Review Group in December 2015.

Health Secretary Shona Robison said:

“The needs of patients and their families are very much at the heart of the new Scottish payment system, which will deliver improved support for those affected by infected blood in Scotland.

“The new scheme recognises that their needs are complex and will continue to change over time. It will be more responsive to them, simplifying the approach to support which was previously delivered by several different UK organisations.

“The Scottish Government is committed to doing all we can to help the people affected by this terrible chapter in the history of our health service. We remain the only country in the UK to have held a full public inquiry and I’m proud that we can now offer the most generous package of support in the UK to those infected and their families.”

CEO of Haemophilia Scotland, Dan Farthing-Sykes said:

“The increased payments that have already been received have made a big difference to the lives of many of those affected. Many of our members have chosen to free themselves from some of the debt that had built up as a result of years of inadequate support.

“Haemophilia Scotland is committed to working closely with the Scottish Government to make the new Scottish Infected Blood Support Scheme as simple and user friendly as possible.

“There is still work to do to fully implement the recommendations of the Financial Support Review Group but the launch of the new scheme today is a very significant and welcome step on that journey.”

The Financial Review Support Group Final Report, which has been fully accepted by the Scottish Government, says that the scheme should keep means testing to a minimum.  How that can be achieved without endangering payments to those on the lowest incomes is going to be one of the largest challenges for the new scheme.

We are expecting to hear more details about the Clinical Review Group under Professor David Goldberg once the Scottish Infected Blood Support Scheme is launched. The Clinical Review Group recommendation will be vital.  They will cover what non-liver health impacts will be taken into account for those applying for the on-going advanced payments (Stage 2).  They will also guide the scheme in determining which of the widow(er)s of those who died at Stage 1 will be entitled to the widow(er)s on-going payment.  Once this work is complete attention will turn to the terms for those who want to exchange their entitlement for on-going support for a one of payment in final settlement.

Scottish Infected Blood Support Scheme Update

Mailing

Thank you to everyone who returned their data transfer forms about giving permission for your information to be transferred to the new Scottish Infected Blood Support Scheme (SIBSS).  The main transfer has now happened and the SIBSS is working towards making it’s first payments.  If you missed the deadline please get in touch with Alliance House as soon as possible, as well as completing the form below.

The SIBSS have already sent some letters out to people where they needed more information to be able to make payments.  Most of these are people who have been receiving income top-up payments but are not currently receiving the advanced regular payments from the scheme.

A short form has also been sent to the widow(er)s,that the SIBSS are aware of, whose partners died when receiving the Skipton 2 payment or MacFarlane Trust payments.  This form invites them to apply for the new widow(er)s regular payments.

The next letter will start going out in the next few days.  It will be sent to anyone else who is due to receive regular payments from April. These letters will confirm that payments will be made from April and will be made on or around the 15th of the month. This letter will go out in batches so don’t worry straight away if you hear that others receive theirs before you do.

Every letter that goes out will include a contact preferences form.  This is to allow the SIBSS to understand how you would like to be contacted by them in the future. It is an optional form but it would really help the SIBSS if you return it.

If you would like to make sure that the new Scottish Infected Blood Support Scheme has your details, particularly if you are a widow(er) or someone who has not received support from the UK-wide schemes, please complete the simple form below to provide the SIBSS with your contact details.

By the completing this form you give permission for the Scottish Infected Blood Support Scheme to retain this information and contact you with relevant information about the scheme.  Please note, the information you supply on this form will be sent directly to the SIBSS. Haemophilia Scotland will not see or keep any record of these details.

Glasgow Haemophilia Centre to mark World Haemophilia Day in style

Glasgow Vintage Tea 2017The Glasgow Haemophilia and Thrombosis Centre has plans to mark World Haemophilia Day with their usual combination of style, panache, and baking.  They are cordially inviting patients to join them on the 21st April from 1pm to 3pm when their waiting room will be transformed into a vintage tea room.

Victorian dress is encouraged but not compulsory.  Whatever you wear, we’d advice nothing with a tight waist as, if previous years are any guide, there will be a lot of delicious treats to try.  You can let them know you are coming along on 0141 211 4840.

This year the World Federation of Hemophilia is taking the opportunity of World Haemophilia Day to bring attention to the women and girls in our community who live with a bleeding disorder or has someone in their lives who does.

World Haemophilia Day is officially on the 17 April every year but around the world many events fall in the surrounding days.

 

BREAKING NEWS: @alexdowsett live Twitter Q&A tomorrow at 3.45pm #HaemophiliaChallengesMe

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Many Haemophilia Scotland members got a chance to meet Alex Dowsett, the record beating elite cyclist who also happens to have Haemophilia, at our recent Try Something Different Day at Crieff Hydro.

He is the face of the Miles for Haemophilia Campaign which is raising awareness of bleeding disorders and the benefits of staying active for those that have one.

cracked-twitter-logo-psd47658As part of the campaigning he will be doing a live Q&A on Twitter from 3.45 – 4.45pm.  All you need to do to take part is tweet your questions including @alexdowsett and #HaemophiliaChallengesMe. If you have space to include us at @HaemophiliaScot too that would be great!

If you aren’t on Twitter but would like to take part, it only takes a few seconds to get started. Please make us one the first people you follow too.

dowsett-q-and-a-delayUPDATE

Sadly, the Q&A had to be cancelled.  However, it is going to be reorganised an we will post new details as soon as we have them.

 

Last chance to have your say in our #NeedsAssessment

Fitbit-Alta-Fitbit-Blaze

We are closing the needs assessment survey on Thursday morning (1st December).  We’ve had a really good response so far but the more people who take part the more useful our results will be.  We are running the needs assessment in partnership with the Scottish Inherited Bleeding Disorders Network so the results will influence the services we offer but also the services of the Scottish Haemophilia Centres.

There are some parts of Scotland that are a little under-represented at the moment.  We are keen that the results reflect everyone in Scotland.  So if you are reading this in Argyll & Bute, Dumfries & Galloway, East Renfrewshire, Orkney, Stirling, or The Western Isles please make a particular effort to take part.

If you do take part then you might also win one of three FitBits that we are giving away.  They would make a great early Christmas present for yourself or could let you cross at least one name of that Christmas shopping list!

Click here to take the survey

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