Parkinson’s patients suffering because of ‘appalling gaps’ in care

Patients with Parkinson’s disease are suffering delays in diagnosis and being deprived of specialist treatment because of “appalling gaps” in NHS care, a report by MPs and peers says today.

The inquiry by the All-Party Parliamentary Group for Parkinson’s Disease found “severe inequalities” in access to services across the country, with a chronic shortage of specialist nurses for the 120,000 Parkinson’s sufferers in Britain.

The report blames ministers and health service managers for a “lack of leadership of neurological services at a national and local level”.

It also found that key guidelines for the NHS on how to treat Parkinson’s are being ignored in many areas, despite potential savings to the health service of nearly £3 million a year.

Patients suffer problems accessing services in nearly all areas of care, the report says, mainly due to significant shortfalls in the number of nurse specialists, particularly across Northern Ireland and Wales.

“These inequalities persist despite clear, evidence-based guidelines for the provision of services”, the report adds.

Parkinson’s is a degenerative disease caused by the loss of brain cells that produce dopamine, a chemical that enables the body to perform smooth, co-ordinated movements.

Patients develop symptoms such as tremors or slurred speech only after about 80 per cent of these cells are lost, so they may have had the condition for some time before problems come to attention. But a poor understanding of the disease among GPs and lack of access to specialists means that diagnosis is delayed or initially missed in up to half of patients, the inquiry was told.

Other problems cited by the report include poor access to therapy services, a lack of information for patients about what services are available and limited respite care.

More than 350 Parkinson’s patients and healthcare organisations gave evidence to the inquiry. Steve Ford, chief executive of the Parkinson’s Disease Society, said that the number of specialist nurses needed to nearly double — from 275 practitioners to 400 — to provide a proper standard of care.

A survey of 13,000 patients and carers by the charity found that more than a quarter (28 per cent) had never spoken to a Parkinson’s nurse disease specialist and 42 per cent had not had contact with a specialist in the past year.

“This report uncovers just how bad services are for many people,” Mr Ford said. “There are significant variations across the country in terms of access to nursing and therapy services which can make a crucial difference to patients’ quality of life.

“Yet why is it that some conditions have a ‘Tsar’ within government, and other conditions like Parkinson’s don’t? This needs to change.”

A National Service Framework for all long-term neurological conditions was published by the Government in 2005, and the National Institute for Health and Clinical Excellence (NICE) issued guidance on treatment of Parkinson’s a year later.

“But these are not mandatory and the NHS is still failing to deliver a ‘joined-up’ approach to care in many areas,” Mr Ford said.

Baroness Gale, chair of the all-party group, said that adhering to NICE guidance to diagnose Parkinson’s earlier and help people manage their conditions at home could save the NHS money, as patients required more appointments or suffered from complications if there were delays in their treatment.

But she said that there was a lack of political and medical will to focus on the condition.

“There has been a shortage of strong leadership in government and in local primary care trusts,” she said. “My father lived with Parkinson’s, so I know first hand the negative impact the condition can have on someone’s quality of life, but still people struggle to get the vital services that they need.

“We need effective monitoring of Parkinson’s services to ensure they meet national guidelines and standards and a guarantee that enough skilled staff are in place to provide the services people so desperately need.”

Ann Keen, the Health Minister, said that she welcomed the all-party group’s report.

“People with Parkinson’s disease deserve the right to access to the essential services they need,” she said. “The number of medical staff in neurology has increased by more than 54 per cent since 1997 and in May last year the Department of Health published a workforce guide on developing multi-disciplinary neurological teams.

“These measures, along with the continual work we are doing with local health and social care communities and the third and voluntary sector… will help people with Parkinson’s disease to manage their condition and maintain their independence and quality of life.”