New research(1) by PHA-UK (Pulmonary Hypertension Association UK), the patient charity for Pulmonary Hypertension (PH) sufferers, released to coincide with PH Awareness week (23rd – 28th of April 2007), indicates that 52% of PH patient’s have had to endure a wait of up to two years, with 41% having to see up to four different doctors, before receiving a correct diagnosis and access to the specialist care and treatments they need to control their condition.
Lack of awareness of PH alongside misdiagnosis are two of the major reasons believed to be contributing to PH patients long wait . With correct treatment and a faster diagnosis almost two thirds of Pulmonary Hypertension patients will survive longer than 5 years, however if not treated, approximately half of PH patients die within two years(2).
During PH Awareness Week, PHA-UK and its members are conducting a number of initiatives to try and boost awareness of the condition. A series of short films has been produced in conjunction with 12 PH patients across the UK by respected TV documentary maker Alan Howard and Producer Paul Pennington to highlight the impact that PH has on their lives. These short and powerful films can be accessed via the PHA-UK website www.pha-uk.com..
PH is a disease in which the blood pressure in the arteries in the lungs elevates putting pressure on the heart and reducing the amount of oxygen that is able to reach the tissues of the body causing breathlessness and exhaustion. This can significantly impact the sufferer’s ability to lead a normal life. It can often lead to heart failure and can be a standalone condition or associated with other diseases. Although there is no cure, there are effective treatments that can help sufferers if they are diagnosed early in the disease progression. Due to its similarities to the more common asthma and lack of awareness of the condition, health professionals often mistakenly diagnose PH.
While there are currently approximately 4,000 diagnosed PH sufferers across the UK, the lack of awareness and frequent misdiagnosis make the actual number of sufferers harder to estimate.
There are eight specialist PH centres in the UK: Western Infirmary, Glasgow Freeman Hospital, Newcastle, Royal Hallamshire, Sheffield, Papworth Hospital, Cambridgeshire, Great Ormond Street Hospital, London, Hammersmith Hospital, London, Royal Brompton Hospital, London & The Royal Free Hospital, London. The PHA-UK study (1) shows that the majority of PH patients managed in one of the specialist centres are more satisfied with the support they receive than those managed in other hospitals.
Unfortunately, in the UK diagnosis doesn’t always lead to immediate treatment. PH treatments are not cheap and the specialist centres are not able to commence treatment without first gaining funding from each patient’s primary care trust (PCT) on an individual basis. The new research(1) shows that the time taken for the PCT to reach a decision on funding can vary enormously, in a third of cases where there is a delay in obtaining treatment funding issues were stated as a contributory factor.
Iain Armstrong, chairman of PHA-UK, says, “The lack of awareness and delays in diagnosis are very frustrating. If people with PH had the opportunity to be referred to one of the specialist centres earlier in their disease progression we would have the ability to greatly improve their quality of life living with the disease. Unfortunately some sufferers are just not getting the appropriate care soon enough and as a result there are limitations for the patients in both the treatments and the outcomes. ”
Notes To Editors:
PHA-UK (charity number 1082613) provides support, understanding, and information for all those people whose lives are touched by PH. Further information on PHA-UK (Pulmonary Hypertension Association UK) visit www.pha-uk.com or call our helpline on 0800 3898 156
The aim of PH Awareness Week is to raise awareness of the condition amongst sufferers, healthcare professionals and the general public to aid faster diagnosis and to make more people aware of the specialist PH treatment centres.
Please could ensure that the PHA-UK website www.pha-uk.com is featured/included in any article or report so that readers/viewers/
References
Ref 1: PHA-UK IMPAHCT survey 2007 conducted with 600 PH patients. This survey was supported by an unrestricted educational grant from Actelion Pharmaceuticals UK Ltd
Ref 2: black c, 2005. pulmonary arterial hypertension:
Ref 3: TNS Consumer Research 2005
