Summary
The Short Break Stays Pilot has been developed in co-production with young adults with life-limiting conditions and their informal carers, and focuses on improving overall well-being through providing respite. The pilot explored the validity of whether our hospice was an appropriate environment.
What Short Break Stays Pilot did
The young adults from our caseload, all living with life-limiting conditions (targeted support), benefited from their short break stay in our "home from home" environment with their parents and families having nights of respite. This was a brand-new service for Greater Glasgow & Clyde (adding value). While on their short break stay, the young adults could enjoy art, complementary therapies, film and games nights, and walks in the park. Having "different four walls" and time away from their parents with a degree of independence was important for young adults.
The informal carers were given the opportunity to stay for the first nights of the short break stay: it was important for the staff at the Prince & Princess of Wales Hospice to learn aspects of the young adult's care. The carers could leave to spend time with their partners and family, having confidence in the team delivering care.
Focus groups (personalisation) were held with the young adults and their parents to determine what was important to them during respite - the environment was recognised as a priority. This led to purchasing specialised beds, mattresses, environmental controls and a shower chair.
Our short break stay team consisted of two registered nurses and two advanced health care workers. Partnership working was evident through the early stages of this team's training and ongoing support. The Prince & Princess of Wales Hospice worked primarily with Children's Hospices across Scotland (CHAS) and Quarriers.
New resources to ensure the young adults were safe during their stay were developed, including creating a "soft signs" SBAR, which helped staff understand and recognise the soft signs of deteriorating health.
The pilot's success was evident from the qualitative evaluation, and the voices of the young adults and their informal carers heard through direct quotes (mutual benefit): all have benefited from their short break stay. We have been able to share the blueprint for the service with interested parties locally and nationally. We will share the final report and evidence with the same individuals and organisations (knowledge and understanding).
.
What The Prince & Princess of Wales Hospice has learned
Targeting families most in need of support:
This short break stay pilot has taken several years to get us from inception through to delivery. During the pandemic, almost all of the young adults known to us were shielding with very little care provision, outwith carers and families, being provided. Due to the ongoing recruitment challenges within health and social care young adults and their carers and families are still experiencing adhoc care provision. It is apparent that all of our young adults require carers support for daily living. Selection for the pilot was based on young adults who were deemed medically stable; have exceptionally complex needs and those who reported struggling with their mental well being. The selection was prioritised for the carers of these young adults who were clearly 'on their knees' with both their physical and mental wellbeing affected. During the 11 weeks pilot where capacity allowed we offered a second break experience to those on the brink of crisis in the hope that this support enabled the provision of ongoing caring to continue.
Partnership Working:
There was recognised times during the pilot that staffing the short break stay pilot for multifactorial reasons was precarious. The organisation had developed two substantive advanced health care support workers posts for the delivery of this pilot, whilst offering two internal secondments for the registered nurse posts. Having access to registered nurses especially for out of hours was a key requirement for this pilot to run. At times the registered nurse staffing on the ward which had offered the secondments was precarious. This highlighting how fragile staffing can be but the huge implications of offering a short break stay and then having to withdraw this offer. The organisation made a decision to not cancel any of this provision and to find creative ways to facilitate this. This including the senior charge nurse of the in patient service covering the short break stay pilot for a full week. Going forward it is imperative that we are creative with recruitments as the above scenario would be unsustainable. Early conversations have already taken place around around placements and how we might encourage experienced staff from other organisations joining the bank for the short break stay service. We are working with Children's Hospice Across Scotland to look at joint working including the provision of staff supporting the short break stay service for young adults in transition from paediatric to adult palliative care. It is recognised by both organisations that this joint working is for everyone's benefit.
Unexpected challenge: Delivering short break stays from an inpatient unit:
Our SBS is unique in that the young adults stay within our specialist palliative care inpatient unit. While the SBS was a social model of care it was necessary for us to understand the young adults medical history, medications, and the wishes of the young adults/carers/families should they become unwell while with us. Ultimately we needed to ensure the safety of the young adult. This involved a comprehensive holistic review of every young adult, including emergency care plans and rescue medications. Advance care plans also had to be discussed and documented.
There was real apprehension from the medical team at the hospice - and those covering on call - regarding the young adults being in the unit, and being unknown to them, but individuals with very complex health care needs, that they weren't confident in dealing with. As a result much time was spend speaking to them about their concerns, undertaking training, developing a summary document on the young adult and their medical condition, and answering questions they had. Without their support we wouldn't have been able to run the pilot: we underestimated how much time this would take and how high tensions would run. Only through delivering the pilot without incident have we been able to reassure them that this is a service that can be run safely from the inpatient unit.
How The Prince & Princess of Wales Hospice has benefitted from the funding
The Creative Breaks Funding enabled PPWH to develop and pilot a brand new respite service to those most in need - the informal care givers of YAs with complex health needs which can not be met in any other location. By doing so we have been able to show that an inequity to respite exists and that young adults living with life limiting conditions can benefit from access to adult hospice services. By building this model of care and sharing it's blueprint and early results with partner organisations and interested parties, the reputation at PPWH as a centre of innovation for care has grown. We are seen as a leading service for young adults locally and nationally culminating in the team winning the "Tackling Inequalities" award presented by Hospice UK in November 2022. With strong foundations based on the hospice's values, we continue to build and strengthen the reputation of our organisation.
On the back of the funding and pilot development and through word of mouth, and between young adults, and informal carers, our reputation as being able to deliver high quality care including as a respite service has been appreciated and shared. This has resulted in a 100% increase in our YA caseload over the last year, especially with young adults living with complex neuro-disability and profound and multiple learning disabilities. Referrals are coming from new partnership links with local authority learning disability teams and renewed links with PAMIS.
Project Outcomes
Outcome
Target 1:We delivered 62 nights away from home for the young adults the difference was due to not all of the young adults were well enough to come in for respite, and some stayed for only 2 nights.
Target 2:We did not deliver 3 wellbeing sessions as most carers wanted to pursue their own interests.
Results
Carers have reported spending more time with friends and family. This information was reported through the provision of focus groups and online questionnaire.
80% of carers who participated in feedback said they were able to spend time with other children and family members.
40% reported spending time with friends.
70 % reported being able to give more attention to their other children
50% reported being able to spend time with their partner.
Through the same process as highlighted above carers reported spending more time on self care.
50% of carers reported having time to reflect
90% of carers reported having 'time out' for mental wellbeing
70% of carers reported having 'better sleep'
60% of carers reported being able to physical rest
Case study
All of the carers of the young adults who accessed this short break stay (respite) this pilot have received little to no time apart from their young adult. None of the carers reported having a holiday away from their young adult, and therefore a break from their caring role.
We gathered the following quotes from our feedback methods.
"Just spending time with our other children, giving them our full attention and not having to do things for X"
"Went for dinner with my girls"
"Going for dinner with my daughter"
"Maybe have a break, go see my best friend down south next time"
Outcome
Target 1:It was reported that 100% wanted the pilot to become a service and for it to be flexible stays
Target 2: Carers were offered access to complementary therapy but declined but accepted evening meal instead of afternoon tea
Results
Carers and young adults will demonstrate improved wellbeing, specifically in the areas of feeling nurtured and respected because of the short break stays.
70% of carers reported it was beneficial to have a break from carers in the home
70% of carers reported it was beneficial to have a break from the routine and time out.
80% of carers reported it was beneficial to have a break from the responsibility of care.
90% of carers reported it was beneficial to be something other than a carer
Case study
All of the carers of the young adults who accessed this short break stay (respite) this pilot have received little to no time apart from their young adult.
We gathered the following quotes from our feedback methods.
"A break to be myself. I had a real sense of calm and peace. Broke the monotony of the day. Great to get lost in time for myself. The thought that someone has thought about this group of boys and their carers is great. Its all the support you get around it from the hospice that makes all the different. That we have been noticed and that someone cares. That doesn't happen often"
"For me, the simplicity of being able to go to bed when I wanted to, rather than when everything else has been sorted from the drug routine to the feeding tube and one ear constantly alert for sounds. Best nights sleep ever for the 3 nights that X was in respite. Trusting someone else to look after her needs is huge for me but the PPWH know X so well I was able to turn off.