By Baroness Gale – 10th January 2011
Baroness Gale discusses the important work of the APPG for Parkinson’s Disease.
Today’s debate on Parkinson’s addresses a subject close to my heart: how to ensure that everyone affected by this devastating condition receives the care they need.
My father was diagnosed with Parkinson’s in the early 1950′s. A coalminer with four of his children under 15 years of age, he had to give up work aged just 50. in 1957 the then Prime Minister Harold Macmillan’s cheery assessment that “most of our people have never had it so good” rang false for families like mine, as the financial strain of not have a wage coming in, and minimal sickness benefit was compounded by the physical and emotional effects of the condition. These were the days before effective drugs, home adaptations, and respite care and specialist nurses.
In 1969, I saw a letter in the Guardian from a fellow Welsh woman, Mali Jenkins, who had just founded the Parkinson’s disease Society (now Parkinson’s UK). I joined the charity and got involved.
Parkinson’s UK is now the leading Parkinson’s support and research charity, with networks of staff and local branches across the country, offering friendship, advice and support. to date, it has invested £45m in research into better treatments and a cure, which has led to advances that would have transformed my father’s life.
Nonetheless, living with Parkinson’s remains hugely life-altering. Symptoms can include stiffness of movement, pain, incontinence and dementia. It fluctuates from day to day and worsens over time.
In 2008, I established the All-Party Parliamentary Group for Parkinson’s. in 2009 we conducted an inquiry into access to services, with expert evidence from over 360 people with Parkinson’s, carers, health and social care professionals and public bodies, Royal Colleges and government. this highlighted shocking postcode lotteries across the UK. Availability of Parkinson’s nurses, therapists, social care and carers’ support varied dramatically, even between neighbouring PCT areas or local authorities. NICE guidelines were not met in many areas.
I am now concerned that government proposals for a radical overhaul of NHS commissioning could increase geographical inequalities.
I firmly believe that access to quality care should not depend on where you live. so I am calling on the government to ensure that commissioning for Parkinson’s is undertaken at a comprehensive, strategic level. Under the proposals, this should be the NHS Commissioning Board’s responsibility. GPs should commission only with specialist advice, including from the third sector. Parkinson’s nurses and preventative social care must not be casualties of the cuts. they provide vital, cost-effective support.
We have come a long way in the last 60 years, but we must ensure that progress continues, even in difficult economic times.
Today there will be a short debate on the Report of the All-Party Parliamentary Group for Parkinson’s Disease, ‘Please mind the gap: Parkinson’s disease services today.’