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Patient & Public Engagement report

September 2018

Jo Polkey - Director of Care

2018

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As a community hospice, engagement with the public is key to our success. We need to provide care that our community, our families and our patients want and the way we know this is through working in different ways to engage with them. The Hospice has used lots of different platforms to be able to engage with our patients and the public. This has gone beyond the usual questionnaires; though some of our feedback has been in that traditional form.

The Hospice has a pool of over 400 volunteers, there are approximately 100 engaged with care directly and these offer another form of engagement, this maybe on a weekly basis as part of our Day Therapy team or as a corporate volunteer providing a one off event for example serving Christmas dinners to our patients and families.

This year we also undertook a project alongside the Greater Nottingham Cancer Forum who completed a Carers Survey among bereaved and current carers. (Report is available separately).

Below is a list of examples of how we’ve engaged with our patients and the public over the last 12 months:

• Focus Groups Oct 2017 & April 2018 – ‘You said we did’ feedback • Post Service satisfaction survey – July 18 (Included with invite to Bereavement Afternoon

Tea Event) • Compliments and complaints forms (reported to the CCG through Quality Monitoring) • Dying Matters Week 2018 (‘Before I die’ chalkboard tour, open day, ReSPECT training) • Carers café – May and September • Hoodwinked Sculpture Trail - ‘Hands of Hope’ robin sculpture • Life’s Whispers – creative writing project. • Palliative and end of life care training – We offer our facilities to outside trainers and have

also provided training to a number of staff groups including Social Care. • Open gardens for the National Gardens Scheme (NGS) • Summer fair • Corporate volunteers • Schools Project – This is about creating links and raising awareness in the community about

the hospice’s work. It will address myths and reduce anxieties around loss and bereavement. It is hoped that patients and pupils will have some fun and laughter.

• Learn More Oct-Nov 2017/ Jun-Jul 2018 • Patient Survey 2018 (Report available separately)

Focus Groups

At the end of 2017 and again in April 2018 we used a volunteer to work with our day therapy patients to facilitate focus groups. These groups were based around a series of ‘touchpoints’ with our service. Every day patients were offered the opportunity to provide feedback on an area of their choice on aspects of our Day Therapy service. All feedback was given to the patients in the form of ‘You said we did’. During the end of 2017 the Day unit underwent significant staffing changes and we knew this would potentially impact on the unit by creating instability and reducing continuity for both patients and staff. It was a good time to see how things may need to change. One aspect that

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we knew we were struggling with was therapeutic activities on offer each day. This was highlighted by patients as an issue comments like ‘time ways heavy when you have nothing to do’ was not the experience we wanted to provide. We appointed an Activities Coordinator and an Occupational Therapist who have had a very positive impact on the Day Therapy experience. Therapeutic activities on offer have been embraced by patients and become more meaningful.

Learn More Sessions

The patients have also been involved in Learn More sessions. These mini teaching sessions ran across November and December and again in May and June where patients, carers and community teams were invited in to learn more about specific topics. These included:

• Breathlessness management • Falls prevention • Caring for the skin • Nutrition • Understanding resuscitation. • Relaxation

This opened up conversations between staff, volunteers and the patients about their aspects of care and have evaluated well.

Carers Café

We recognise the important role of carers and the difference they make in enabling the person they are caring for to remain at home. They also have a minefield of information and services to navigate. The Hospice opens its doors to the community by providing support and advice sessions on a quarterly basis. The cafés are supported by various organisations including Solicitors, the Department for Work and Pensions, Office of the Public Guardian and Her Majesty’s Revenue and Customs. There are bereavement volunteers on hand to offer practical and emotional support too. The numbers attending these events are growing. The September event saw Carer’s Trust attend with Inspire Culture (an organisation who supports carers with learning). This along with our carers survey will help us determine how our carer support should be offered in the future.

Dying Matters Week 2018.

Dying Matters week in June saw a week of activity to engage the community at our Retail outlets. Each day at a different shop a member of the care team took out a huge chalkboard for the public to write on their bucket list – ‘Before I die I want to…’

This had a mixed response – (possibly dependant on the staff members’ approach to the public). Each day the board was full of wishes – these were retweeted as part of the Dying Matters campaign #BeforeIdie #DyingMatters. It gave the care team an opportunity to engage with retail staff and volunteers. Our nine shops are key to their communities, each shop has a regular customer base and this is something we are keen to learn about and utilise in the future as part of our engagement strategy. Also as part of Dying Matters week we opened our Hospice up to community staff to come and learn about how to use new end of life documentation (ReSPECT). Dr Christina Sharkey provided drop in sessions throughout the day and over 30 members of the Community teams attended. This

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was the first time many of them had attended the Hospice and again an opportunity for them to see first-hand the services on offer so they can give first-hand knowledge of what the services on offer are. Our Open Day to the public on the Friday also attracted new people to the hospice, not a usual place people want to go and look round but this did provide us with self-referrals to the service and a new volunteer.

Life’s Whispers – Creative Writing Project.

The hospice teamed up with Global Wordsmiths CIC and an 8 week funded Arts Council project to offer a course of creative writing where 17 patients, staff and volunteers focused on points in their life which were poignant to them. Life’s Whispers - Journeys to the Hospice was launched at Waterstones in June where to a packed house patients were able to tell those stories. It was very moving and incredibly powerful.

Hoodwinked Trail – Hands of Hope.

In April we saw the delivery of the ‘Hospice Robin’ which had been sponsored by Absolute Building Services Nottingham (ABSN), for the Hoodwinked trail and for the patients to design and paint its covering. Local artist Jess Kemp came to talk to the patients and work with them on the design of

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their Robin. This was a real engagement opportunity to find out what was the importance of the Hospice for our patients. The Robin – Hands of Hope – has been a creation of all things important to them. The Chinese writing in the heart on the Robin’s chest was designed by one of our patients who is Chinese, and means ‘House of Peace and Tranquillity’. The wings of the robin are decorated in the hands of our patients. The sunflower on the back of the Robin has special meaning for one of our Day Therapy patients as it represents her late daughter’s favourite flower. The Hoodwinked Trail has been on the streets of Nottingham along with 32 others throughout the Summer weeks. There have been thousands of visits to the sculptures by the public. The patients have all been offered the opportunity to go and see parts of the trail as part of the Day Therapy experience. The Robins go up for auction mid-October following their Farewell Event and there is hope that the Hands of Hope will be purchased for the hospice as it means so much to the patients.

Schools Project.

It’s well known that children lift the energy in an a hospice environment and this is true of the schools that visit us. Often schools take part in traditional singing at Christmas at the hospice, and we are now looking to strengthen the connections we have with local schools so that whilst our patients benefit from the energy and enthusiasm that the children bring, the children learn about loss in a safe and supported way.

During the summer of 2018 we had a series of ‘teddy bears picnics’ in the garden. These picnics involved more interaction between pupils and patients than Christmas singing had provided. Patients and pupils played games together, shared stories about their ‘teddies’ and toured the hospice gardens.

The picnics received very positive feedback from pupils, teachers and schools and were enjoyed by patients though it was felt that more interaction between pupils and patients could have occurred. It was concluded that this was a great starting base to take schools work further and to develop an interactive teaching programme which benefits patients, pupils, schools, parents and Nottinghamshire Hospice. This programme is due to start in Spring 2019.

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National Garden Scheme – Open Gardens August 2018

More than 150 people attended the Hospice when it opened its gates and garden to the public. It hosted a ‘care’ themed treasure hunt so that as people explored our garden they found out a little more about the organisation and care the Hospice provides. The Easter Egg Hunt in April had also used the ‘care’ themed treasure hunt so that children and families again took away more than just chocolate.

Moving forward into the Autumn of 2018 - Spring 2019 we will continue to enhance our engagements with both our patients and public. We have a series of Christmas events and are looking forward to the schools project in the Spring. New developments will be looking at Transition of Young Adults into Adult Hospice care through partnership working with Rainbows Children’s and Young Adults Hospice. A request from our Focus Groups was to look at a patient committee, with the nature of the service we provide there needs to be some consideration to how this is done. We have approached the GNCF to consider facilitation of a Hospice User Group (HUG) in the New Year.