Jacquie Upton, Rowans Hospice at Home Team Manager, explains how the service, originally funded by the community’s response to Dorothy’s Dream Appeal, has developed.
When I first started work as a social worker in the hospice in 2007, the CEO Ruth White was really keen on widening access to the end-of-life care the hospice provided to the wider community.
The Dorothy’s Dream Appeal (based on the line from The Wizard of Oz, ‘there’s no place like home’) was launched to raise funds to set up the service, as it was apparent from research and patient feedback that many patients wished to die at home.
Thanks to the public’s generous response, including a single significant donation and with help from the trustees, Dorothy’s Dream became a reality in September 2011.
As a fully-qualified nurse and social worker, I applied for the role of team manager and haven’t looked back since. The service has just gone from strength to strength.
No two days are the same. It can be hard but I love knowing that although I can’t change the situation, every day I try my best to make a positive difference.
Initially set up as a 20-month pilot, the team consisted of a team manager, a co-ordinator, qualified nurses and healthcare support workers. The aim was to provide 24/7 specialised supportive care to patients and their families who were thought to be in the last few days of life at home.
It quickly became clear that there was a need for his service and the decision was made to continue the service as the Hospice at Home Team.
Fundamentally, it’s the patients’ needs that have directed the service’s growth. So since we started the criteria for referral to the team has widened, to ensure people in our community who want to die at home can access hospice expertise earlier and establish therapeutic relationships with the team.
We now also provide end-of-life care for those who are dying within residential homes and for people with learning disabilities who want to stay and be cared for by their carers in their home environment.
Sometimes it is difficult for patients with multiple and complex needs to leave the ward and return home, so we now also provide ‘ward to home’ support. Also we are now providing our support to some patients in the last 12 weeks of their life, in response to evaluation forms completed by families who have used our service, stating they wished the Hospice at Home team had been involved for longer.
This extension of our service is possible due to developments within the different health authorities we work within.
I love the fact that our person-centred approach underpins and drives our service, that we are not task-focused and that we respond to what the patient and their loved ones want.
Some patients and their relatives require regular visits for personal care, some for symptom management and medications, others require sudden urgent visits (SOS). Families often tell us they would not have managed to care for their loved one at home without our amazing help, advice and management.
Our night sits, for example, allow the family to get a good night’s rest, reassured that we will care for their loved one whilst they sleep. Plus families know they can contact us any time to for advice and assistance.
I can honestly say I have put blood, sweat and tears into building this service into one which I am extremely proud of. The role uses all my professional experience and skills as a qualified nurse, social worker and community experience as a midwife. Plus during my time running this service, my mum and dad have both died, so I really empathise with what families are going through.
I acknowledge the importance of listening to what the patients and families are saying. As I knew my dad, I knew he was about to die but for those that didn’t know him, he didn’t reveal signs they expected to see. We make sure we listen and give the support that the patient and their loved ones actually want.
I know that every single member of the team is completely dedicated, caring and compassionate and will always aim to do their best for every person in our care.