New research published last week reveals that many people are not aware of what social care is or how to access it.

Good quality social care can make a big difference to the lives of people affected by Parkinson’s but often people don’t get social care support until they reach crisis point.

Social care services can help people in their own homes, for example with personal care, preparing meals, giving medication, or getting out and about.

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Social care experiences

As part of the study (commissioned by Parkinson’s UK and undertaken by researchers at Sheffield Hallam University) people affected by Parkinson’s were asked what they valued about social care and about their experiences of services.

The findings clearly showed that timely and quality social care, which meets the needs of people with Parkinson’s, improves the quality of life of those affected by the condition.

A need for ‘Parkinson’s aware’ care

The research found that all too often, people with Parkinson’s had a poor experience of care.

  • socialcareresearchsummaryThe timing of essential visits to help with their medication, or personal care was particularly bad. These seemed to be arranged to suit the service, not the individual, and were often rushed. This can be very dangerous for people affected by the condition, particularly if their medication is not given on time.
  • People felt they had little choice and control over matters.
  • Their knowledge of their condition was not listened to and services that would help them feel less socially isolated were not offered.
  • If people and their loved ones were helped earlier on, and services had an awareness of Parkinson’s, a whole host of benefits could be achieved.

The support was found to reduce crisis events, such as a hospital admission, even slowing down the need for residential or costly care as the condition progresses.

It would also reduce the likelihood of a person’s carer reaching crisis point.

Support early on makes sense

Amanda Stannard, 56, from Essex, supports her husband Kevin who has Parkinson’s (both pictured above).

Even now, at my wits end, there’s still no guarantee help will be offered.

Amanda approached social services for help 2 years ago and after being assessed was told she was coping OK.

Both Amanda’s health and the couple’s finances have suffered from a lack of support and Amanda had a minor stroke recently on top of the many other health issues she has.

She says that they aren’t asking for much – it’s just simple practical stuff that would make all the difference.

“No guarantee help will be offered”

Kevin had to give up work due to his Parkinson’s so finances are very tight, which means they just can’t pay for this sort of support. Amanda says:

“It makes no sense to leave carers and disabled people to get to crisis point, as we have, and so less able to cope than if we’d had the proper support in the first place.

“Even now, at my wits end, there’s still no guarantee help will be offered.”

Take action

The research found that all too often, people with Parkinson’s had a poor experience of care.

Please share your stories with us about getting social care, good or bad experiences help us campaign for change – email campaigns@parkinsons.org.uk.

In England, the Government is consulting on where to set the rules on how people will get the information and the care they need and at what point with their Parkinson’s.

We’ll be using the research to argue for earlier support but you can also respond to the consultation.

MORE: 

Advice and support from Parkinson’s UK

Parkinson’s UK provides education and training and useful resources to support professional carers in their role – find out more.

Read the findings: http://www.parkinsons.org.uk/news/18-june-2014/unique-study-social-care-and-parkinsons-published#sthash.HA9rUYaX.dpuf