Working in Scotland

News 31 May 2024

In our recently published five-year strategy we highlighted our aim to ensure that we can support people affected by cardiomyopathy throughout the UK.

People from all over the country already use our helpline, information, website and peer support services, and anyone who has ever been to our national conference will know that people come from far and wide to be part of this empowering event.

You will also have seen that over the last few years, we have been doing more to influence the health and social care policies as well as the NHS services that impact people affected by cardiomyopathy. To do this, we work with a wide range of stakeholders including other charities, clinicians, NHS organisations and politicians.

If we want this work to be effective, we need to recognise that there are important variations in the NHS structures, decision-making processes and devolved powers in different UK regions. That is why in Scotland, for example, we work with the Health and Social Care Alliance Scotland, the Scottish Heart Failure Alliance, the Network of Inherited Cardiac Conditions Scotland, Public Health Scotland’s Cardiac Audit Programme and other key stakeholders.

The process for deciding which drugs are made available via the NHS in Scotland is also different to the rest of the UK. Last year we worked with the Scottish Medicines Consortium to support its work in assessing the suitability of new drugs Mavacamten and Tafamidis, both of which have now been approved for people in Scotland.

Another big difference that impacts our ability to support people in Scotland is that Scotland has its own register of charities. This means that any charity that wants to increase its presence in the country needs to be registered with the Scottish Charity Regulator (OSCR) even if they are already registered with the Charity Commission in England. Because of our plans to do more in this region, trustees decided to apply for charitable status in Scotland. We are pleased to say that our application has now been accepted.

So, now we can forge ahead with our plans to increase the number of local Scottish support groups and work more closely with the Scottish government, NHS Scotland, Public Health Scotland, and other important stakeholders in the region.

Over the coming year, we will take a similar approach in Northern Ireland and Wales. We look forward to updating you on our work in these regions and on our progress towards meeting the goal of supporting people throughout the UK.

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