Category Archives: Governance

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.

AGM and Gathering

snow-700x459We are delighted to announce that our AGM and Gathering will be held at the beautiful Hilton Dunblane Hydro on 19th & 20th March 2016. We have a fantastic range of topics, wellbeing activities and entertainment from the Andy Gunn Band – all free of charge to members (and membership is free)! For more information and booking details, please see: https://haemophilia.scot/support/events/gathering-and-agm-2016/

Maureen Watt MSP releases the full text of her speech

Maureen Watt MSP, Minister for Public Health, addressing the Richard Lyle MSP (also pictured) event for Haemophilia Scotland and The Hepatitis C Trust.

Maureen Watt MSP, Minister for Public Health, addressing the Richard Lyle MSP (also pictured) event for Haemophilia Scotland and The Hepatitis C Trust.

We’ve had a lot of contact from members who wanted to know exactly what the Minister said at our joint reception with The Hepatitis C Trust about the Penrose Inquiry.  Although we have been able to post some video of the speech there was much we couldn’t cover.

Normal protocol is not to release speeches like this but the Minister and her office recognise that reduced mobility and geography mean that many who would have liked to attend weren’t able to.  Therefore, they have made an exception and allowed us to reproduce the official text of the speech used by the Maureen Watt MSP, Minister for Public Health, on the night.

PENROSE INQUIRY

The Penrose Inquiry has been a huge undertaking, and will deliver a comprehensive, historic record of the events that led to patients treated by the NHS in Scotland becoming infected with Hepatitis C, HIV or both, through the use of blood or blood products.

As I’m sure you’re aware, the warning letters stage of the Inquiry, which is a complex and detailed part of the process, is not yet complete.  The legislation which applies to Inquiries obliges Lord Penrose to issue warning letters to anyone likely to be subject to criticism and reasonable opportunity must be given to consider the criticisms and then make submissions within 28 days.

Lord Penrose has recently written to the Cabinet Secretary for Health, Wellbeing and Sport and has stated that he will be in a position to announce a publication date once the warning letters process is completed.

VALE OF LEVEN

The Vale of Leven Hospital Inquiry report recently concluded that serious individual and system wide failures at the Vale contributed to the deaths of 34 patients.   Lord Maclean highlighted that a number of lessons need to be learned to ensure an outbreak such as this never happens again.   Although the NHS has moved on since 2007 and made significant improvements in reducing Healthcare Associated Infections, we should not be complacent.

The Vale of Leven recommendations should, I hope, have a far-reaching impact for NHS Scotland and beyond, and result in further improvements to patient care.

I fully understand and appreciate that many of you will be disappointed at the delays to the publication of the final Penrose report, but our experience of the Penrose and Vale of Leven Inquiries has demonstrated the difficulty of imposing time constraints on an Inquiry, simply because you cannot at the outset know what lies ahead in an Inquiry’s investigation.  Equally, if an Inquiry is to be truly independent, Ministers cannot exert pressure on the Chair to complete the Inquiry prematurely.

HAEMOPHILIA SCOTLAND AND HEPATITIS C TRUST

I know that Haemophilia Scotland and the Hepatitis C Trust will continue to advocate strongly on behalf of those in Scotland who have been affected by infected blood products.  I hope that we can continue to work in close partnership on the response to the Penrose Inquiry recommendations.  I hope both organisations feel, as I do, that Scottish Government has always tried to engage with patient groups productively.

I am pleased to see that Haemophilia Scotland have also agreed a Memorandum of Understanding with The Haemophilia Society, who will have a close interest in the Inquiry report from a UK perspective.

I would encourage all of the various third sector organisations with an interest in the Inquiry to engage constructively with each other.

ACCESS TO NEW HEPATITIS C THERAPIES

Up until 2012, the most effective pharmaceutical treatment for hepatitis C was Interferon-based. I know that many patients undergoing these treatments experience quite significant side effects.

We are entering a new and promising era for treatment, with around 30 new and improved hepatitis C drugs in trial phase at present, and some already available in Scotland. My predecessor established a Treatment and Therapies Subgroup to generate principles and guidance in relation to Hepatitis C diagnosis and treatment in the era of Interferon-free therapy, and I know that the patient voice is represented on that group. The outcome of that work will be incorporated into the next iteration of our Sexual Health and Blood Borne Virus Framework.

At the moment, however, Sofosbuvir has already been approved for use in Scotland by the Scottish Medicines Consortium.  NHS Boards in Scotland are already making it available to patients.

But we cannot over-estimate the significant challenges associated with the costs of these drugs and we are working hard to find solutions to this challenge.

It is also important that patients are involved in discussions about their treatment with their specialists – I very much recognise the need for this.

DUTY OF CANDOUR

We are committed to improving the safety and reliability of healthcare in Scotland, reducing avoidable harm.  You may be aware that the Scottish Government intends to introduce a new statutory obligation on organisations providing health and social care services.  This statutory obligation will be to have effective arrangements in place to demonstrate commitment to disclosing instances where there has been physical or psychological harm to service users or patients.

We need a consistent, robust approach to the involvement of patients and families throughout the process.  When things go wrong people naturally want to be told honestly what happened, what will be done in response, and to know how we will stop this happening again in the future.

There will always be concerns about the theoretical transmission of other agents via the blood supply, and we must continue to maintain vigilance around any emerging threats.

Where decisions are made in challenging, fast moving circumstances, they are open to challenge.  In those circumstances, the main priority is to keep patient safety at the heart of decision-making.

FINANCIAL SUPPORT

We intend to review the existing financial support provisions for people who contracted Hepatitis C from NHS infected blood when the final report of the Penrose Inquiry is being considered.

To help inform that review, we commissioned the Scottish Infected Blood Forum to undertake a scoping exercise to better understand the support needs of patients and their families.  This should hopefully be in a position to report by the end of the year.    I know that representatives from Haemophilia Scotland and the Hepatitis C Trust sat on the Project Reference Group for the exercise, and helped develop the survey.  Thanks to all who were involved in that work.  The response rate has been significantly higher than we expected and the survey analysis should usefully add to the evidence-base for future decisions.

I can assure you that before making any changes to the current financial support system, a formal Government consultation exercise will also be conducted.

BENEFITS

I know that a significant proportion of people with blood borne viruses are dependent on state benefits for their basic living needs.  Hopefully the Smith Commission recommendations will give us more power over welfare and benefits in Scotland, allowing us to do more to protect vulnerable Scots.

CONCLUSION

Finally, I am grateful that you invited me to speak at this reception.  I hope that the Penrose Inquiry report will ultimately provide the answers that those affected want and deserve.

New understanding with The Haemophilia Society

Bill signing the MoU with Dan, Nikki, Lynn and Angela

Bill signing the MoU with Dan, Nikki, Lynn and Angela

At the July meeting of our Board of Trustees we signed an important document about our relationship with The Haemophilia Society.

You can read about the principles we will follow and some examples of what that might mean in practice by reading the Memorandum of Understanding we have agreed.

We hope that this document will mean that relations between our two Charities are put on a solid foundation for the future.