A new advocacy programme to ensure pulmonary hypertension receives greater attention from Government has been established by PHA UK.
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Hocus2021 is a five-year programme with the aim of pushing for the changes to public policy that PH patients really want to see. The group behind the programme is made up of representatives of PHA UK, plus leading medical professionals in the field of PH, academia and general practice and a special ‘patient panel’ made up of patients, carers and family members. Political relations experts, Decideum Health, are supporting PHocus2021 to achieve its strategic objectives and make an impact.
PHocus2021 was established last year and will run until 2021, working to:
> Be an advocacy group for PH and a ‘critical friend’ to NHS England, lobbying Government on matters affecting the PH community; > Raise the profile of PH amongst Government, policy-makers and senior NHS decision-makers; > Actively protect PH from disinvestment and work to improve services across the UK; > Provide a forum where policy issues affecting the PH community can be raised and debated, and solutions proposed. Iain Armstrong of PHA UK is co-chair of PHocus2021, alongside Professor Paul Corris of the Freeman Hospital in Newcastle. He said:
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“The lack of transparency and proper consultation with senior figures within clinical and patient communities has led to the PHA UK leaving NHS England and setting up PHocus2021 to exert scrutiny onto a broken system - and to demand more for PH patients by pushing for change.”
What does PHocus2021 hope to achieve? The PHocus2021 programme has four main objectives, based around reducing time to diagnosis, emphasising the importance of patient quality of life, unblocking new treatments, and reducing financial hardship incurred by living with pulmonary hypertension. As part of its work to reduce the time to diagnosis, PHocus2021 aims to educate professionals in primary and secondary care about the condition, its signs, and when to appropriately refer to specialist care. This will be achieved via further research to understand the reasons behind delays to diagnosis, establishing an engagement programme with GPs and practice nurses, and exploring the possibility of PHocus2021 producing its own patient pathway or guidelines. This area of work will be closely linked to the findings of the recent Living with PH survey, which highlighted
