You are here

Caring for people with Parkinson's Disease

Caring for people with Parkinson's Disease
15th December 2009

A number of recent announcements have made commitments to help improve the care that is out there for those with Parkinson's disease.

In the Queen's Speech, the personal care at home bill was announced. According to the government, it will look to ensure free personal care for the 280,000 people with the greatest needs, including those with Parkinson's disease.

Among the numerous proposed benefits, the bill would help 130,000 people who require home care to regain their independence for the first time. Also on offer would be modifications to homes or technology which can provide a person with greater independence and reduce care needs.

The bill would also be the first step towards setting up a new National Care Service, the government said.

"My government will introduce a bill to enable the wider provision of free personal care to those in highest care need," the Queen said.

Responding to the bill, chief executive for the Parkinson's Disease Society (PDS) Steve Ford noted that his organisation was pleased about the announcement of additional funding for personal care at home.

However, Mr Ford also had this to say: "We are concerned at the lack of clarity as to whether this applies to younger people with conditions like Parkinson's who also have considerable needs."

He said that one in 20 people who have been diagnosed with Parkinson's are under the age of 40 and two-thirds are unable to work. On top of this, Mr Ford explained, people of a working age with Parkinson's and their carers are normally "worse off financially than older people with the condition".

"For people with Parkinson's, a debilitating condition affecting every aspect of daily life, the necessity of care at home before retirement age is a very real possibility," Mr Ford added.

Meanwhile, November saw the end of the Big Care Debate consultation which looked for people's opinions on the care and support system and what they want to see in the future.

Care services minister Phil Hope commented: "We are already analysing the responses and these will help us to continue our work to create a National Care Service that is fair, simple and affordable - and that has the interests and rights of families and carers at its very heart."

While the consultation on the proposals may have come to a close, the Big Care Debate continues and the government has said it will still listen to people as it develops plans for the National Care Service.

Commenting on the impact of the debate, the PDS said: "Whilst the proposals are long-term and don't do anything to address the immediate shortfall in care, the debate has been a really important opportunity to raise issues around social care for people with Parkinson's, and has given people the chance to engage. "

But what about carers? Are they getting the assistance they require? According to a survey of PDS members, they are not. The poll, completed by more than 3,000 carers of people with Parkinson's, showed that they are not getting the information and support they need.

Looking after those with Parkinson's is even bringing about health concerns for the carers themselves. More than half (51 per cent) of respondents said that their health had deteriorated as a result of caring. The research indicated that health worsened the longer the person had been caring.

Meanwhile, just a fifth of carers (20 per cent) had been given information about the health or social care services available, even though 88 per cent saw this as important or very important.

So it seems that more help is needed for carers as well as those with Parkinson's. It remains to be seen what more will be done for both.