The Secretary of State for Health, Jeremy Hunt MP, met with representatives of the Alpha-1 community last Tuesday (13th May 2014) at the Department of Health to discuss the unmet medical need of Alpha-1 patients and the associated requirement to establish a highly specialised service for patients affected by the condition.
The meeting was attended by Mark Pawsey MP, Margaret Millar (co-founder of the group Alpha-1 Advocacy & Action) and Karen North (Trustee of the Alpha-1 UK Support Group), both from the Alpha-1 Alliance’s Executive Committee, Dr David Parr (Consultant Respiratory Physician at the University Hospital Coventry) and the Alliance’s Secretariat.
During the meeting, Margaret Millar and Karen North, representatives of the patient community, shared their experience of living with Alpha-1 and the impact the disease has on their lives.
Margaret Millar, an affected patient who lost a sister to the condition, highlighted the burden the disease places on herself and her whole family, describing living with Alpha-1 as a “steady decrease of quality of life”. She said: “I had to give up work because of the disease, I often have chest infections, my social life suffers and I have difficulties walking my dog”.
Karen North, who also suffers from Alpha-1, shared a similar experience to Margaret’s, describing the challenges imposed by the disease: “Everyday tasks many people take for granted such as bathing, shopping and walking on even the smallest incline will leave me breathless and sometimes gasping for air”.
Dr Parr, a respiratory consultant and Alpha-1 expert, briefed the Secretary of state on the clinical aspects of the disease and the current management of patients with Alpha-1 in the NHS. Dr Parr explained that the rarity and complexity of the disease meant that patients often experience a significant delay in receiving a correct diagnosis and in obtaining expert advice on the disease and its clinical management. He advised that patients desire and need access to an integrated multidisciplinary team based in dedicated centres where clinical expertise can be concentrated to facilitate optimum care.
In the meeting, the Alliance also expressed its concerns over the current uncertainty and lack of clarity of the commissioning process for highly specialised services and its application process. The Health Secretary requested to be kept updated on the progress of the campaign.
Source: Alpha-1 Alliance 29/05/2014