The findings of the 2016 Living with PH survey, conducted by PHA UK, were shocking. 48% of those with pulmonary hypertension waited over a year after first experiencing symptoms before being diagnosed. And 40% saw four or more doctors before being diagnosed. This time to diagnosis has remained unchanged for several years and can impact on prognosis and quality of life for PH patients. “The longer that PH is allowed to progress, the harder it becomes to restore the patient to a good quality of life, which is why it’s so important to reduce the time it takes to diagnose the condition. Early diagnosis makes for a better prognosis.” – Dr Simon Gibbs, Lead Clinician and Honorary Consultant Cardiologist for the National Pulmonary Hypertension Service at Hammersmith Hospital, London We want to reduce the time to diagnosis for pulmonary hypertension by educating colleagues in primary and secondary care about the condition, its signs and symptoms, and when to appropriately refer to specialist care.
It was three years after Steve Stickler complained to his GP of being out of breath that he was given the pulmonary endarterectomy (PTE) he needed. Read his story here.
It took Sarah Marshall 8 years to get a diagnosis. Hear about her experiences here.
98% of respondents to the Living with PH survey, conducted by PHA UK in 2016, said that having pulmonary hypertension impacts upon their overall quality of life. Having PH affects people’s abilities to carry out basic tasks and get around, and living with the condition can have a significant impact on emotional wellbeing, self-esteem, frustration and worry about the future. Those close to people with PH also tell us that supporting someone with pulmonary hypertension can put significant strain on them too. PHocus2021 will work to ensure that NHS England and relevant health authorities update national commissioning guidelines so that these appropriately reflect the importance of patient quality of life, as well as appropriate self-care, as measures for service quality and patient outcomes. This will be achieved through establishing an engagement programme with key stakeholders to draw attention to PH and the risks associated with decreasing funding of its services, and developing a strategy for growing the membership of PHA UK. The patient panel that contributes to the structure of PHocus2021 is key to helping us achieve our aim of improving the overall health, wellbeing and quality of life of patients with PH and their kinship – based on their needs and preferences. David Stott battled deep depression linked to his diagnosis. Find out how it affected his quality of life here.
An urgent review is needed on decisions regarding new therapies available for PH currently blocked or deferred by national funders, so that PH patients receive the best quality care for this debilitating, terminal disease. There is a clear need to reinvest in new treatments and the specialised service which is so vital for, and relied upon by, PH patients. But there are indications that PH might become de-prioritised, and the service may face more challenges in engaging efficiently with NHS England. The PH clinical reference group has been merged into a broader Specialist Respiratory group, alongside conditions such as cystic fibrosis, and recent advances in new innovative medicines are currently blocked by NHS England, despite them being available widely throughout Europe and the USA. There is a need to invest in new treatments and the specialised service which is delivering for patients already. The Living with PH Survey, conducted by PHA UK in 2016, reported that when patients received their diagnosis at a specialist PH centre, 62% strongly agreed that they understood their condition. This compares to just 46% who strongly agreed that they had a good understanding when their diagnosis was given by a local hospital. The same survey reported that upon receiving treatment, which with PH is provided by specialist clinicians in a small number of key hospitals across the UK, 88% of respondents experienced an improvement in their overall quality of life.
Many people with PH are forced to give up work or reduce their working hours due to the impact of their condition, having a significant knock-on effect to their personal and family’s financial situation. Time and again, PHA UK is contacted by members struggling to navigate the complicated welfare system, or by those who have been refused what they are entitled to. For people already struggling with the physical and emotional impact of a life-limiting condition like PH, financial hardship can have a debilitating effect on their quality of life and mental health. The Living with PH Survey, conducted by PHA UK in 2016, showed that for almost half (41%) of patients, pulmonary hypertension has a ‘major impact’ on their ability to attend work or education. And the same survey showed that for 63% of patients, PH has a negative impact on their financial situation. Of those people, over 26% reported it having a ‘major impact’. We are currently conducting further research into the financial impact of PH, to identify priority areas and, once this has been completed, will commence a campaign calling for reforms to the welfare system and other areas, such a insurance provision, to ensure PH is appropriately recognised and PH patients no longer experience unfair treatment and exclusion. Myra Morrison had to fight for a year to access personal independence payments. Read about her struggle here.
Pulmonary hypertension is in need of greater PHocus from Government today.
There is a disproportionately low level of attention paid to PH compared to other conditions. Pulmonary hypertension is often ignored or misunderstood in policy circles and by NHS funders of specialist services, putting the future of services and quality improvements at risk. This course needs to be corrected.
Overall as a proportion, based on disease burden, PH receives less funding than other therapy areas, such as cancer and certain genetic diseases, which tend to capture greater political attention – despite the prognosis for PH being equivocal to some cancers, and its high impact on quality of life for patients.
This graph shows the top ten areas of spend for specialised services in England, accounting for 63% of overall spend. The PH service does not feature.
Specialised service areas with the highest costs 2014-15, The commissioning of specialised services in the NHS, National Audit Office, April 2016
PH patients are calling for change, and so are we.