We’ve gathered a wealth of information on respite care, what people want and need, and where the gaps are.

We talked to more than 1,600 people across the UK to find out what people living with MS need and want from respite care – and you had a lot to say! Read on to find out what we learned.

What’s important?

Overwhelmingly, people told us they want more individualised service and more choice – and holiday-style breaks.

Top of the list were:

• access to specialist MS services, therapies and expertise
  
• access to social activities
  
• a range of flexible options
  
• services which promote independence and enablement
  
• being sensitive to diverse cultural needs
  
• knowledge and understanding of MS
  
• private rooms with en-suite facilities.
  

People with MS felt social interaction was vital, while carers felt it was most important that the care provider understood the needs of people with MS.

Generally people are happy with the services they are using; however MS Society respite centres rated highest for benefit and quality, while hospital stays and befriending schemes were the least popular respite care options.  

What are the barriers to accessing respite services?

The biggest barrier is the cost of respite care services, followed by lack of information about what’s out there and a lack of appropriate services to meet the care needs of an individual.  

What should the MS Society do?

People had a range of different ideas about how the Society should be involved with providing respite care – but there was general agreement on key areas that the Society should be involved in.

• Providing information about respite care opportunities and guiding people though the system.
  
• Actively encouraging services through accreditation and working with holiday companies.
  
• Campaigning to improve standards of care and to make respite services more affordable.
  
• Encouraging equity of holiday grants and respite subsidies.
  

 

What’s important in different parts of the UK?

In England personalisation is high on the agenda, and there are calls for more support for carers. The interest in personalisation is increasing in Scotland, and devolved responsibility to Health Boards is an issue.

In Northern Ireland and Wales re-organisation is on the agenda, while in Wales there is also concern about the lack of commitment to respite care.  

Next steps

In early 2010 we’re running conferences across the UK to share our plans with people with MS, their carers, local MS Society staff and volunteers and local health professionals. This will make sure we’re on the right track, and help fine-tune our plans.

Then we'll shape our recommended strategy for the future of day and respite services for people living with MS. This strategy will set out where we want to be, how we're going to get there and how we can best use our resources.

These recommendations will de decided on by the MS Society Board of Trustees in mid 2010.  

What is the MS Society respite care review?

The review will find out what people living with MS need and want from respite care, and describe where we are now in terms of meeting those needs. The review will then establish where we want to be, and make recommendations on how the MS Society can best use our resources to ensure those needs are met, reflecting both national policy agendas across the UK and our own five year strategy. Finally, the review will map out how we are going to get there.

This will form our strategy for the future of respite services for people with MS. We need to be sure we work towards a future where people have access to respite care services that reflect their needs and preferences.

It is important the review does not take place in isolation, and considers the current political agenda in health and social care across the UK. The review will reflect the wider government agenda which includes:

• an emphasis on personalisation, choice and control
  
• a focus on prevention and the reduction of health inequalities
  
• promotion of independence for people with MS, their families and carers.

 

More about respite care and the review

How did you find out what people think about respite care?

During June and July this year we talked to people with MS and their carers to find out what they think about respite care. We did this using a survey and focus groups throughout the UK.

The survey was available online, and was also posted to a random sample of 2000 of our members with MS across the UK - roughly 5% of the members from each nation. The postal survey had a good response rate of 26% among people with MS. We received more than 1600 responses overall, of which 63% were people with MS and 37% were carers.

Sixteen focus groups were held across the UK. The participants selected gave us the views of a range of people, from people who use services regularly to those who have never used any form of respite care. The focus groups encouraged discussion on choice and control, access, types of respite, quality and cost, among others.

How are you communicating the progress of the review?

Updates at each stage of the review will be made here, on our website, in our members' magazines, our branch magazine and information stands at events, such as regional meetings. We'll also make information available through our respite care centres, newsletters for support groups and professionals and online through Facebook, Carers UK and other relevant websites.

Why is the MS Society reviewing respite care?

We want to make sure the MS Society provides care in the best possible way to meet the needs and preferences of people affected by MS. Good quality care can make a positive difference to the lives of people with MS, and carers.

We want to have a strategy that reflects the changing needs and preferences of people with MS, their families and carers. We want to make sure that people have more choice and control over how they receive care.

There is a lot of great care on offer, at the MS Society’s centres and elsewhere. There are also gaps and overlaps in services, and development of respite services in the future will need to reflect the wider government agenda of personalisation, choice and control.

How long will the review take?

We have gathered information from a wide range of sources, and will discuss initial findings at the MS Society AGM in September 2009 for feedback. Further recommendations will be made to the Board of Trustees in May 2010. We plan to start applying these recommendations in January 2011, subject to Board approval.

What is respite care?

Respite care covers a wide range of different short term services, all designed to provide a break which is a positive experience for both carers and people with care needs.

It can be offered in respite centres, care homes, in another person’s home, in your own home, health care settings such as local hospitals, on holiday, through befriending programmes and peer support groups and more.

Why is respite care important?

Respite care:

• helps carers to safeguard their health and continue caring
  
• prevents social isolation for people with care needs and carers
  
• can help overcome a crisis
  
• allows carers to spend time with family and friends
  
• helps people with care needs develop independence.

What respite services does the MS Society provide?

The MS Society makes a significant financial contribution to the cost of providing respite care through its three centres in England and one in Scotland. The MS Society also runs a ‘preferred provider’ scheme which accredits other good quality respite care services, and commissions a small number of respite beds from local authorities.

More information about MS Society care services.  

More information

For further information on the review please contact the Care Services Team at respitecare@mssociety.org.uk or phone 020 8438 0925.