Social care and Parkinson's

Hi everyone, :wave:

Many people with Parkinson’s are able to live independently or are cared for by friends and loved ones. However, there will often come a time when additional support is necessary. In these situations, timely access to high quality social care is vital for people with Parkinson’s, in order to help them remain in control of their situation and avoid families reaching crisis point.

What do we mean by ‘social care’?

Social care for people with Parkinson’s can include:

  • personal care
  • help in the home
  • aids to stay independent
  • supportive environments such as day centres and residential care homes

It can also include support for carers, to help them take a break from their caring responsibilities.

The social care system

Parkinson’s UK carried out a piece of research a number of years ago and asked people with Parkinson’s, carers and Parkinson’s local advisers how the social care system is working for them and found that:

  • People with Parkinson’s and their carers in England weren’t aware of their local council’s information about social care, or even how to ask them for an assessment.
  • Parkinson’s local advisers were concerned about the knowledge and understanding of Parkinson’s among council staff who assess whether someone should receive social care.
  • Around two thirds of local authorities that took part in the research didn’t collect data about people with Parkinson’s they had assessed.

Over to you! :blush:

It would be interesting to hear from forum members about your experiences of accessing social care support and, if you were able to gain social care support, what your experience of receiving it is!

  1. Have you, or someone that you care for, had an assessment of social care needs?

If yes, please tell us about your experiences of the assessment (for example did the assessor appear to have a good knowledge of Parkinson’s, were communication difficulties taken into account etc):

  1. What experiences have you had accessing social care support in your own home?
    (Examples of social care in your home are help from a care worker with tasks like washing, dressing, getting in/out of bed, help with the housework, disability equipment or adaptations to your home. As opposed to healthcare in the home which relates more to medical treatment e.g. district nurses.)

  2. What experiences have you had with accessing financial support or funding for social care support?

  3. Thinking about the range of social care needs that you identified in your assessment; what needs were supported and what were left unsupported?

Please feel free to share your answers by commenting on this thread like you normally would with any other thread on the forum. :slight_smile: