Sleep Matters – A volunteer delivered sleep support service Linda Henry Regional Dementia Leads Group 27 September 2016

What I will cover The origins of Sleep Matters The development of the idea The Grimsby Pilot The Salford Extension Pilot Results conclusions Plans for the Future Any Questions? NHS Modernisation Agency. No natural home for the sort of work we do. Priority issues are issues of concern in health and social care and can be raised by the population or more commonly by service providers in the area.

About Unique Improvements (UNI) Social enterprise since 2006 – EX NHS Invests surpluses in new projects and pro bono work. Based in NW but covers the UK Work with challenged communities whoever they may be. We work with communities to identify priority issues, how to unpick them and then build a sustainable and appropriate solution. NHS Modernisation Agency. No natural home for the sort of work we do. Priority issues are issues of concern in health and social care and can be raised by the population or more commonly by service providers in the area.

The origins of Sleep Matters Idea of Jacquie Wood, Director of Keepsake for Life, (now Sleep Matters CIC). Developed within the NEL Releasing Community Capacity Programme. Jacquie has a background in 3rd sector mental health and SEN work. Sleep is a big issue for SEN patients and despite sleep programmes for children none for adults with dementia. Delivered by trained volunteers - Sleep Matters is a non – pharmacological approach, using low tech approaches to improving sleep.

Why is Sleep Matters needed? Most dementia is characterised by sleep disturbance for both the person with the condition and their carers. Lack of sleep contributes to stress, affects mental health and wellbeing and ‘Near the edge’ Cited as main deciding factor when considering whether to transfer care to the care sector from home. Main NHS treatment option is medication.

The development of the idea. RCC invested £10,000 in local pilot. Worked through setting the pilot up using the RCC Change Champions training which has a number of steps: Understand the need – research and surveys Generate ideas – small tests – what works? Measure impact – whose impact?

The Grimsby Pilot March 2014 to March 2015 Aimed to recruit 5 volunteers to deliver the service. Aimed to recruit 20 families – 17 referrals received 8 in the programme. All cared for by their families and 2 with MCI.

Outcomes Improvements in sleep for person with dementia Reduced daytime naps, leading to being able to sleep at night Lowering of blood pressure Carers feeling better able to cope Didn’t go on long enough Couldn’t get any more funding and struggled to get NHS to accept it

The Salford Extension pilot 9 Sleep support volunteers recruited to deliver the service as part of the Salford LTC programme. 37 clients referred into service More comprehensive measurement approach – Rickter Scale©, questionnaires and databases.

Results 15% Improvements in Home life 19% Improvement in Sleep 14% Improvement in diet 19% Improvement in managing time 25% Reduction in isolation 24% Reduction in stress 11% Improvements in emotional signs / managing the emotional symptoms of stress 13% Increased happiness in perceived state of health 10% Improvement in the ability to communicate thoughts and feelings with others 33% Reduction in ‘closeness to limit’ felt. This is particularly important as it relates to how close the relative is to a point that they feel they can no longer continue with their caring responsibilities and may seek alternative caring provisions. A lack of sleep and being unable to cope are the main reasons people cite for admitting the relatives to residential care.  Closeness to limit is a subjective measure which relates to how the carer feels able to cope on the day.

Conclusions Sleep matters works although it still needs to be refined. Potentially it could delay the transfer into the care sector. It is a relatively low cost initiative. Volunteer delivered with a small budget for training, expenses and equipment. Still potential to check out prescribing costs to see if reducing. SM needs a supporting infrastructure to support the volunteers and manage governance.

Plans for the future Successful application for small budget in Salford to perform some longitudinal analysis to see if benefits maintained. £10,000 received. NEL CCG opening discussions about resurrecting the SM programme. Considering applications to national funders to deliver the programme on a bigger scale and to spread it to other areas.

Any Questions?

Linda Henry t: 07885 979642 e: Linda.Henry@uni.uk.net