Member News
By Michael Courtney - 30th October 2009
People suffering from Parkinson's disease face "major inequalities" in access to expert care, according to a report commissioned by an all-party parliamentary group.
The APPG on Parkinson's disease met earlier this week to discuss ways to take forward the recommendations of the report, Please Mind The Gap, which was published in July.
Brian, a pensioner diagnosed with PD seventeen years ago, addressed the group. He spoke about his symptoms and the concerns shared by many people living with the disease.
"Without my medication I can lose control over my body," he said.
"However, at times the side effects from the medication can be more cumbersome than the symptoms they try to prevent."
Brian reiterated the wishes of many PD sufferers, namely that medical professions and the wider community "gain a greater understanding of PD and have increased access to a wider range of information and high quality services".
The report found shortfalls in areas including but not limited to: access to PD nurse specialists, particularly in Northern Ireland and Wales; access to therapy services and poor understanding of PD among some of the professionals involved.
Additionally, the report outlined barriers to the delivery of greater quality services including a lack of impetus to implement the NICE guidelines and other quality frameworks, and poor leadership for neurological services at local and national level.
Baroness Young of Old Scone, chair of the Care Quality Commission, addressed the meeting.
"The first step is to register 44, 500 providers of public and private health care services over the next three years," she said.
"This will help to improve and standardize the treatment of patients with PD.
"Greater power can be given to users of health care services with the implementation of NICE guidelines as well as carrying out annual assessments of NHS services for PD."
A member of the group commended the work of specialists working in PD care and research at clinics in Leeds and London, but stressed that these are the only centres of excellence, making access for many patients throughout the UK costly and time consuming.
Baroness Gale, chair of the APPG, reassured the group that MPs and peers should work to raise these issues in both Houses.
She urged this to be done with haste to ensure the recommendations of the report are taken forward before the general election.
Dods Parliamentary Communications Ltd