RECOGNISE the vital contribution of the informal carers in hospice and palliative care and place them in the central role in determining the success or otherwise of the patient experience.
RESILIENCE – Put strategies in place that will increase the resilience of carers to enable them to fulfil their caring role.
RECOVERY – Do not neglect to provide support to the carer to aid recovery in the bereavement period.
I have worked as a nurse for over two decades at St Peters Hospice in Bristol, England. For several years now I have been an enthusiastic advocate in supporting the families and friends who care for our patients. I am delighted to use ehospice to encourage hospices and other healthcare organisations to ensure that strategies are in place to support carers in helping them to meet the often difficult and stressful demands of being a carer of someone with a serious and life-limiting illness.
In order to RECOGNISE carers we first need to know ‘who are the people we would define as carers?’ In the UK the definition used by the National Institute for Health and Clinical Excellence (NICE), is: ‘Carers, who may or may not be family members, are lay people in a close supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management.’
The background to my becoming passionate about supporting carers was when I realised just how much time I was spending listening to their concerns when they brought the patient they were caring for to spend the day with us in our hospice day care facility. I recognised that the level of stress seemed particularly high for some carers and they had lots of problems and worries they needed to discuss.
However, it was apparent to me when listening to the concerns of carers, that some carers seemed to cope much better than others. This led me to question, what was it that made some people more resilient? Though each person will find their own path to becoming more RESILIENT in any situation, in my view these five top tips are particularly pertinent in countering the adverse effects of being the carer of someone with a serious and life-limiting illness (psychologytoday.com):
- Build a community of support
- Find meaning in adversity
- Be hopeful
- Focus on gratitude
- Accept and anticipate change
While all of these are important, it is the first one ‘Build a community of support’ which we as hospice professionals can encourage and be a vital part of.
Peer support
In 2004 Help the Hospices began a four-year initiative aimed at encouraging hospices countrywide to develop services aimed at just that. With the benefit of their encouragement and some extra training from Help the Hospices I felt ready to take forward my plan to assist in addressing the unmet needs of the carers at St Peters Hospice.
I am pleased to say that many other hospices up and down the country were taking up the challenge in their own innovative ways to provide more support to their carer population. As I was already very familiar with the value of the peer support among our day hospice patients in sharing their experiences, it seemed logical that bringing carers together to do the same could likewise be very beneficial to them.
However, I was also mindful of the fact that just talking to other carers wasn’t going to be enough. Carers also needed to receive information and education to best equip them for their role. As a carer once said to me, “It’s not as though you can just pop into your local book store and buy the manual that tells you how to be a carer”. Thus our six-week Carers Education and Support Programme was launched and has now been running for seven years.
The course takes place one afternoon a week for two hours and is facilitated by a nurse and a social worker. The leaflet is made available to carers to choose themselves whether they would like to attend, rather than it being the decision of a professional. The first session always involves finding a consensus from the group by brainstorming from the wheel what they would like to have included on the course. Every carer is given the booklet ‘Caring Counts’ produced by Help the Hospices.
Further support
Apart from the six-week course there are several other ways that carers are supported at St Peter’s Hospice. A recent development has been the creation of a psycho/social/spiritual care team, referred to as the PSS team, which currently consists of an occupational therapist, social workers, a music therapist, nurses and chaplaincy. While all those disciplines existed before, putting them under one umbrella has added more focus and structure aimed at addressing the psychological needs of patients, families and carers. There is a recognition at St Peter’s that the whole family of the patient must be supported, including any children and young people who themselves may have to contribute in caring for the patient, in addition to dealing with the psychological impact of an ill family member.
Also this year St Peter’s Hospice has appointed a bereavement coordinator to ensure that carers can best RECOVER when their caring role comes to attend. This can be provided on a one-to-one basis from our specially trained volunteers or there is an opportunity for bereaved carers to attend a six-week course, which adds the value of peer support as with the carers course.
Other services that form a vital part of the ‘community of support’ are the home visits from the hospice clinical nurse specialist and when our patients attend the day hospice it provides respite for carers. In addition we have a hospice at home service that provides 24-hour nursing care in the last few weeks of life to enable carers to cope when a patient wishes to die at home. Recently the hospice at home service has expanded to also provide occasional respite to carers who are in desperate need of a break.
As a long-time advocate for carers it was a huge honour for me to be given the opportunity to attend 10 Downing Street during Carers Week in June 2011 at which the Prime Minister launched a campaign for greater support and recognition for all unpaid carers. I was particularly pleased to have the opportunity to talk with Lord Michael Howard, who is the chairman of Help the Hospices.
The European Association for Palliative Care (EAPC) set up a taskforce to look at improving support for family carers. In September 2010 a White Paper was published in the European Journal of Palliative Care outlining the roles and needs of carers and with recommendations for their support. We now have a strong imperative to take the need to give timely and appropriate support to carers of palliative care patients seriously.
I will continue to champion the role of carers as I strongly maintain that if we look after our carers they will better be able to look after patients, so the investment is hugely worthwhile.
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