{"id":3787,"date":"2019-08-05t11:34:04","date_gmt":"2019-08-05t10:34:04","guid":{"rendered":"\/\/www.aselpijama.com\/?p=3787"},"modified":"2019-08-05t11:39:31","modified_gmt":"2019-08-05t10:39:31","slug":"research-reveals-financial-impact-of-rare-heart-and-lung-disease","status":"publish","type":"post","link":"\/\/www.aselpijama.com\/research-reveals-financial-impact-of-rare-heart-and-lung-disease\/","title":{"rendered":"research reveals financial impact of rare heart and lung disease"},"content":{"rendered":"

press release: people living with the rare disease pulmonary hypertension are suffering financial distress and an unfair battle for benefits, according to new research.  <\/p>

the beplay.asp (pha uk) has\nlaunched the findings of its study into the financial impact of pulmonary hypertension\n(ph), a serious life-limiting disease affecting the heart and lungs. <\/p>

results show that on average, patients in full time work at\nthe time of diagnosis lose a third of their income. over 80 per cent of those\nwho have applied for benefits found the process difficult or \u2018extremely\ndifficult\u2019. over half were turned down upon first application, but 78 per cent\nof those who appealed had their application approved in the end.   <\/p>

ph affects just 7,000 people in the uk. there is no cure\nand if patients don\u2019t respond to treatment, they may undergo a lung and \/ or\nheart transplant. <\/p>

symptoms typically involve breathlessness, fatigue,\nblack-outs and swelling around the ankles, arms and stomach. ph affects the\nability to carry out basic tasks and to get around and it can affect anyone, of\nany age. <\/p>

the results of the research show over half of people with\nph say they now have more difficulty paying bills, and 84 per cent say life or\ntravel insurance quotes are now more expensive. <\/p>

jayne venables, 50, lives in sittingbourne in kent and was\ndiagnosed with ph in 2014. she now uses a wheelchair and oxygen and after\nhaving to give up work as an administrator, she has been forced to borrow money\nfrom her family \u2013 including her teenage children. <\/p>

jayne said: \u201cmy husband had to give up work at the same\ntime as me to become my carer, so we went from two incomes to none in the space\nof a few weeks and have lived off benefits ever since. the financial\nimplications of ph have brought a lot of stress to the family.\u201d<\/p>

jayne describes applying for benefits as a \u2018minefield\u2019.\n\u201cthere\u2019s a real lack of understanding amongst decision-makers and assessors,\u201d\nshe said. \u201cthey see the word \u2018hypertension\u2019 and think it\u2019s high blood pressure.\nthey look surprised when i come into the interview room in a wheelchair, with\nan oxygen tank, and an intravenous medication line coming out of my body.\u201d <\/p>

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jayne venables<\/figcaption><\/figure>

alysha sharma, 23, lives in coventry and was diagnosed with\nph last year. she applied for personal independence payments (pip) but was\ndenied the higher rate. upon appeal she was awarded the higher rate for\nmobility, but not daily living, and decided to accept the decision to avoid\nhaving to attend a tribunal. <\/p>

she said: \u201cmy initial assessment felt like an interrogation;\nit was intimidating, and the assessor clearly didn\u2019t understand my condition. then\ni had the added pressure of worrying about sitting in a tribunal and having to\npour my heart out in front of people i don\u2019t know. i ended up accepting the\ndecision because i was so worried they would end up taking it all off me\ninstead. <\/p>

\u201ci don\u2019t want to claim benefits, i find it embarrassing at\nsuch a young age, but i don\u2019t have a choice because i\u2019m too ill to work. i\u2019m\nworried about it all and i don\u2019t believe in myself anymore – which is really\nhard.\u201d <\/p>

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alysha sharma<\/figcaption><\/figure>

the pha uk, the national charity for people affected by\npulmonary hypertension, will use the results of its financial impact survey to\ncampaign for change. <\/p>

iain armstrong, chair of the pha uk, said: \u201cpulmonary\nhypertension is a disease which robs people of their financial stability,\nthrough no fault of their own. this research shows just how serious the problem\nis and we now have strong evidence that the unfair benefits system is simply\nadding to the financial distress facing ph patients and their families.<\/p>

\u201cit\u2019s abhorrent that patients are having to go through\nappeals and tribunals simply to get what they are entitled to, battling\nignorance along the way. these people are being let down by the very system set\nup to support them.\u201d <\/p>

the pha uk is based in sheffield, south yorkshire. it is\nthe only charity in the uk dedicated to supporting the ph community; made up of\npatients, their family and carers, and nhs professionals.<\/p>

the full results of the pha uk\u2019s financial impact survey can be accessed here<\/a>. <\/p>

media contact: mary ferguson on 01226 766900 or <\/em>mary@capitalbmedia.co.uk<\/em><\/a><\/p>

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