We have called on the UK Government to make cystic fibrosis a priority in the Autumn Budget and Spending Review 2021

News - Ben Kind, Head of Policy & Public Affairs -

We are dedicated to making sure that people with cystic fibrosis can live a life unlimited, free of the challenges of CF. We want to ensure that the CF community receives the best care, the right treatments, and the right support – so we have written to the Chancellor as he makes big decisions on funding public services ahead of the Autumn Budget and Spending Review 2021.

No reduction in funding for specialised CF services

The NHS plays a crucial role in all our lives – but in the last 18 months the COVID-19 pandemic has led to fundamental changes in the way our health system works. For the CF community this has seen changes in how people interact with their CF teams, including limits to face-to-face contact and staff pressures within services. At the same time, through shielding and the uncertainty over cross-infection the whole country has experienced some of the emotional and mental burden that many in the CF community have always lived with. 

The care needs of people living with CF are changing – in a large part due to the roll out of modulators such as Kaftrio to those who can benefit. But we don’t have certainty yet about how those needs are changing. We’ve asked the Government’s across the UK to recognise that future care provision for CF will need to reflect this uncertainty. With additional winter-related pressures looming for the NHS, and at the busiest time of year for CF services, now is not the time for widescale changes to the way care is delivered, so we have specifically also asked for a commitment in the Autumn Budget and Spending Review 2021 that confirms there will be no reduction in funding for specialist CF Centre healthcare services.

End PIP re-assessments for people with long-term conditions

Despite advances in treatment, CF remains a long-term condition with no cure. The additional financial costs of living with CF can have an impact on day-to-day finances and many people rely on the extra support they can get from the social security system. To ease the financial difficulties that some people with CF face, we have asked that consideration is given to ending Personal Independence Payment (PIP) re-assessments for all people with long-term conditions like CF where the treatment burden and health is unlikely to change dramatically. Specifically, we have drawn attention to the negative impact that constant PIP re-assessments have on the mental health and wellbeing of people who are also living with a long-term condition. Removing this requirement could do so much to relieve some of the daily pressures and anxiety people face about managing their finances.

End prescription charges for people with CF

In addition, we have asked that that the Government use the Autumn Budget and Spending Review 2021 to amend the prescription charges exemption list so that all people in England with cystic fibrosis are exempt from prescription charges, in line with the rest of the UK. 

The exemption list was produced in 1968 when children with CF weren’t expected to live to be adults so the assumption at that time was that there was no need to exempt people with CF from paying for their prescriptions. Thankfully, advances in treatment mean that people with CF are now living longer but, as a result, CF is one of the few chronic conditions where people must incur this additional cost burden to live longer.

We hope that the UK Government and devolved administrations will take the opportunity to undertake positive steps for the CF community to secure the funding for our specialist CF healthcare services, relieve the burden on those who rely on financial support from the social security system and bring England in line with the rest of the UK when it comes to prescription charge exemptions for people with CF. We don’t underestimate the economic challenges the nation faces during the recovery from the COVID-19 pandemic, and we will continue to lobby for politicians across the UK to put the right support in place to make sure that people with CF can live a life unlimited.
 

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