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Respite care and multiple sclerosis - your needs and wants - Carers UK Forum

Respite care and multiple sclerosis - your needs and wants

Take part in research or give your opinion in a survey.
This consultation survey has now closed. Thank you for sharing your views.

The MS Society, the UK’s largest charity for people affected by multiple sclerosis (MS), is currently undertaking a review of respite care across the UK. The review will focus on finding out what people with MS and their carers need and want from respite care.

Respite care enables carers to take a short break from caring, while ensuring that the person they care for continues to receive the best possible care. Respite care helps carers look after their physical and emotional health and amongst other things it makes time for carers to spend with family and friends.

The MS Society wants to find out what people living with MS want from respite care. This means speaking to people with MS who already use respite care services and to their carers. We want to hear what works best for you, your needs and preferences.

We also want to hear from people who do not currently use respite care in order to find out their needs and preferences for the future.

We aim to ensure that any future services reflect what people affected by MS say they need and to highlight any gaps in what is currently available.

Kind regards

Debra Garside
Head of Care Services
MS Society
my wife has been diagnosed for 11 years now...we have only been offered respite twice!!!!
both times were whilst i was still trying to hold down a full-time job..

the first occasion was a week in the Lanfine Unit in Liberton Hospital, Edinburgh for an assessment due to a deterioration in her illness...however there was no additional family accommodation for our 2 young sons and she knew that I would be unable to work long hours and cope with childcare etc
Being on a very low wage our finances were so precarious that we could not afford private childcare

Her other concern was that I was not able to accompany her, she is very shy and introverted with strangers...she basically closes down so much she cant tell them anything or take any information from them.... "doesn't understand what teachers, doctors etc tell her, gets easily overwhelmed by their questions and doesn't take in the information they tell her".
Although she has always felt this to be a problem for her problem, her MS has definitely affected her cognitive processes...

anyway the system was unable to meet the needs of our particular situation so she turned down the chance for a real in-depth assessment

the second occasion was when we required to have a wet-floor room installed and since the local authority could not complete the work on time we were facing being left over a week without water/ toilet facilities etc...her brilliant consultant from from the Lanfine Unit told us about a respite place in east lothian...but only one of our sons could accompany her.....and because i was working i would have to pay...we were heading for bankruptcy so that wasn't an option....so yet again the available facilities were unable to meet our needs..it was only much later we found out it was Leuchie House run by the MS Society

in addition although she had been diagnosed for years that was the first time we became aware that there even was an MS Society..nobody tells you anything...any improvements in our situation are hard won, usually after after a long thankless beaurocratic battle and as a result of our research.

Thankfully we are now menbers of the MS Society and VOCAL...both have been a lifeline for us....still dont know how one goes about getting respite to suit the needs of a family...we desperately need a holiday but our financial situation is worse as I now care for her full-time
Done this thanks.
We have never been offered respite and to be honest, the MS society has done nothing at all for us and in fact, when my oh was mobile and did some volountary work for them, caused a situation that made my oh worse. Image
I was at the numpty hut (the Scottish Parliament) recently and heard the Health Minister say (in reply to a motion in support of carers)...one of the main difficulties is identifying who is a carer so we cant allocate funds etc.....

so i would like to see a national scheme whereby carers could have their carer status registered and officially recognized by the state, the NHS, the MS Society, Carers UK and their local Carers Centre..

it was 7 years on from her diagnosis with PPMS that we even found out there was an MS Society...we only found out after a friend directed me to VOCAL and through them I found out about the MS Society

perhaps this national registration and recognition scheme could be done by the GP/CONSULTANT/NEUROLOGIST at the time of the diagnosis..or if you are already caring but dont yet have a final diagnosis (MS can take a long time to reach a final diagnosis) then this should be able to be done upon request at the start of the care journey.....

i iwould like to see a legislative duty placed on medics, social workers etc to consult with us as primary caregivers and to channel all relevant information so we are treated as equal partners in the provision of the care plan

i would like it to be enshrined in legislation that our advocacy on behalf of the wishes of our carees must be taken into consideration alongside that of other agencies

i would also like for all new carers to be offered a place on the MS Caring With Confidence training course and to be given an information pack containing all the information it has taken me years of struggle to find for myself...eg benefits....aids and adaptations...funding....training and information...counselling and support services
Thank you very much for your posts. We will take the information and suggestions about respite care and carers issues into account.

For more information about the help and support the MS Society can provide, or to talk through your options, contact the MS Helpline on 0800 800 8000 or email helpline@mssociety.org.uk

Read more about the MS Helpline on our website at http://www.mssociety.org.uk/support_and ... index.html

Find out more about the respite care services the MS Society provides on our website at http://www.mssociety.org.uk/support_and ... index.html

Kind regards
Debra Garside
Thank you to everyone who shared their views on respite care.

Outcomes of the review will be presented at the MS Society AGM in September, in MS Society members' magazines and on our website after the AGM.

Thanks for your support.

Debra Garside
Could you post when it is on your website please.
thank you.