What people affected by MS think about social care
With a membership of over 44,000 people, the MS Society is able to provide social care professionals with the views of people affected by MS, and can offer a direct route to increase service user involvement.
Our members describe vastly differing experiences of accessing and using social care services. Many report a positive experience that has met their expectation, but still far too many have a less than positive account and feel that the system has failed them. Whether someone has a positive or negative experience of social care is often simply down to the issue of where they live, and who they see.
People with MS experience a number of difficulties in accessing and using social care but here are some of the most commonly reported:
Put simply, people with MS want easy access to social care support services that meet their specific and individual needs, and that enable them to live their life as they chose.
To find out more about the experiences of people with MS please look at the attached papers. These include;
Direct Payments OLR Research paper (229 kb)![[pdf]](/display_images/document_icons/pdf.gif)
Towards independence and choice: Findings from a qualitative tracking study with people with MS applying for Direct Payments.
Listen to the voices of people with MS (71 kb)
A publication capturing the real-life experiences of people with MS against the 11 quality requirements of the NSF
The Social Care Lottery [coming soon]
Views on care workers
People with MS experience a number of difficulties in accessing and using social care but here are some of the most commonly reported:
- A lack of information about social care, the services provided and how to access them, at an early stage of their diagnosis. As a result people are faced with a desperate search for help, when they are in crisis, and least able to cope.
- Difficulties trying to gain early/small intervention services that would help to maintain independence, due to the eligibility criteria restrictions.
- The Care Needs Assessment process failing to effectively respond to people experiencing a relapse or emergency, and not recognising the fluctuating and variable nature of MS.
- Many people with MS are unhappy with their care package arrangements but feel compelled to accept what is offered because they are worried that the alternative will be no support.
- Navigating between health and social care, whilst struggling to cope with fatigue, depression and everyday life, is stressful, time consuming and difficult without additional professional assistance.
Put simply, people with MS want easy access to social care support services that meet their specific and individual needs, and that enable them to live their life as they chose.
To find out more about the experiences of people with MS please look at the attached papers. These include;
Direct Payments OLR Research paper (229 kb)
Towards independence and choice: Findings from a qualitative tracking study with people with MS applying for Direct Payments.
Listen to the voices of people with MS (71 kb)
A publication capturing the real-life experiences of people with MS against the 11 quality requirements of the NSF
The Social Care Lottery [coming soon]
Views on care workers
