As one of the largest hospices in the UK, Princess Alice Hospice covers a catchment area of around 1.2 million people, working with four clinical commissioning groups.
Referrals have doubled over the last decade, with over 3,600 patients referred to the hospice in 2015.
Many of these patients are supported and cared for by their family and friends, but without the right help and support these informal carers can struggle to sustain the level of care they provide, and experience a negative impact on their own health and wellbeing.
Our vision is for carers to have access to the support they need – when they need it – and be recognised as expert partners in care. Carers should feel able to positively influence the support that both the service user and they themselves receive.
With this in mind, our strategy adopts the national vision; carers will be universally recognised and valued as being fundamental to families and stable communities.
In addition to this, health policy (1,2) emphasises the need to raise awareness of the significant contribution that carers make and identify ways to improve support – ensuring good outcomes for carers of all ages, in terms of their own health and wellbeing and of their quality of life.
To understand better the needs of our carers, we undertook an initial scoping exercise, asking other hospices to share their strategic work on carer support. This highlighted a paucity of carer strategies across other hospices.
We then ran a number of workshops in 2015 inviting carers, past and present, and hospice staff, both clinical and non-clinical. These enabled us to learn from the experiences and expertise of carers as well as seeking staff opinion on what the hospice could do to provide support. In total, 38 people (23 staff and 15 carers) took part in the workshops.
Through discussion and debate, four key themes were identified which highlight carers’ needs:
The transition from cure to palliation
Carers felt that they and their relative had very much focused on active treatment and if not cure then the prolonging of life. Referral to palliative care was a shock due to the negative connotations associated with the hospice:
“I think the ‘transition’ periods are a time when support from the hospice is crucial… Initially I felt [the referral] might almost be too soon but subsequent events have proved the help invaluable.”
The physical and emotional impact of being a carer
Carers experienced both physical and emotional symptoms due to the exhaustion of caring for their deteriorating relative. While some felt anxious or guilty for ‘wishing it was all over’, others recognised the importance of looking after themselves in order to be able to carry on caring:
“I realised if I was going to be able to keep mum at home, I had to get out regularly and do things for me…”
Lack of acknowledgement of carer needs
Carers who had no previous experience of caring felt that practical advice on how to care, what to expect and what to look for would be useful. One discussion group identified a need for practical care lessons and preparation for the dying process:
“We were given a leaflet about the dying process and were warned when death was likely to come soon but I think it might have helped to have talked things through in more detail.”
The challenging phase of the end of life
Both carer workshops discussed the importance of acknowledging the need for ongoing support and continuity, and the acknowledgement that the death of their relative can mean the loss of valued relationships with staff and the organisation:
“In the days before he died we had many people visiting the house. The district nurses came in several times a day… our [hospice] nurses either visited or were in contact and we had friends and family members coming and going. Once he had died all this stopped and I remember feeling very alone.”
It was acknowledged by staff that, while they supported family members, the patient was the central focus of care, and the workshop findings echoed much of their own observations and experiences.
We then developed recommendations with our carers – focusing on strategies that would offer support to carers, by empowering and enabling, while addressing their own wellbeing.
Key recommendations and actions:
- The image of the hospice in the locality
A local media campaign is underway, with a community mobile unit providing written and verbal information about our work and the services we offer. The hospice is also identifying ways of working more closely with NHS trusts to increase knowledge and encourage earlier referral to our services. - Acknowledging the role of the carer
We are introducing a formal carer assessment, written information and advice for carers on the physical and emotional impact of caring and information about hospice services they can access, education for hospice staff about the consequences of caring on wellbeing, and a 24-hour helpline for carers and family members. - Respite
We are looking more creatively at breaks for carers and offering night sits, ‘carer days’ at the hospice, ‘hospice neighbours’, and signposting to other organisations, as well as more traditional respite options. - Bereavement care
Among other means of support, we are increasing our focus on the importance of established relationships and we are piloting a ‘carer companion’ role – a volunteer befriender who can support the carer during the weeks and months both before and after the death of their loved one.
This project has enabled the hospice to learn from the first-hand experiences of those caring for relatives and loved-ones with a terminal illness. Stories have been shared openly and honestly, allowing us the privilege of insight into the personal and very real difficulties carers have faced in their caring role.
We recognise that the implementation of our carers’ strategy will happen over a period of time. Some initiatives are ‘quick wins’, while others will take longer to deliver, but we feel that this project has begun to address the ways in which we can improve the carer experience and place value on the vital role that they play.
As part of Carers Week 2016 (6 to 12 June), Princess Alice Hospice is holding a carers’ day, offering a variety of complementary therapies, hairdressing, and advice on nutrition, exercise and relaxation for the carers of our patients.
References
- Department of Health. Carers Strategy: Second National Action Plan, 2014-2016. HM Government; 2014.
- NHS England. Commitment for Carers. NHS England; 2014.
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