Hello my name is…Sharon Hudson and I am the Lead Nurse for Community Services at Birmingham St Mary’s Hospice.
I have worked in Palliative Care for 20 years, it is for me the heart and soul of nursing and every day is a privilege for me to come to work and make a difference to people’s lives.
What has emerged for me over the years is that Hospice and Palliative Care really improves the lives and deaths of those it touches but… we don’t reach everyone who needs us. There are still inequities in access to palliative care for example for people with diseases other than cancer, for young people, elderly people, people living in nursing and care homes. We need to reach these people too and make a difference in their lives.
My particular interest is the care of people with respiratory disease. They can live with problems such as breathlessness and anxiety, pain, social isolation and the need for carer support but our services don’t adequately support these needs.
It was with this in mind that when given the opportunity to complete a Masters in Health Research, supported by the University of Birmingham and the National Institute of Health Research, I chose to examine the barriers to palliative care for people with Chronic Obstructive Pulmonary Disease (COPD).
My research journey has not been easy, you need to learn the posh research words and write really long essays, but I have learned so much.
I asked health professionals what they believed the barriers to palliative care were and in short they gave me 4 themes;
- People with COPD do not understand their disease, what it means and that it could be life-limiting.
- People with COPD also do not understand what palliative care is, they think it is only for people who are dying and they do not see themselves as dying- so it does not feel relevant to them.
- This makes it difficult for doctors and nurses to have a conversation to introduce palliative care.
COPD is a disease in which people can live quite well from day to day but experience dips or flair ups – it is difficult for health professionals to know when is the right time for palliative care services
Communication and Relationships:
Access to palliative care works when people with COPD have a trusted key worker with which they can have honest conversations, this can be a GP, consultant, physiotherapist or specialist nurse. Trust is important to have the right conversations at the right time in a sensitive way.
Care systems can not and do not work in isolation. To enable people with COPD to access palliative care; respiratory, primary care and palliative care services need to work together. We need multidisciplinary meetings and clear pathways for care.
Palliative care services need to provide care which specifically meet the needs of people with COPD; to help them manage their breathlessness, fatigue and anxiety, to support their families and be there when they need us.
So… what was the point of the research and what now?
Well it tells us what we need to do to reach more people and what things are preventing this. It helps us to design the right service.
So what are we doing at Birmingham St Mary’s Hospice?
We are already offering Satellite Clinics in Jiggins Lane and Sparkbrook, we plan to expand these across the city and to offer specific breathlessness services.
We offer a therapeutic programme of care in our Day Hospice where people can access advice on staying well, exercise and relaxation.
We have forged great relationships with our Respiratory Teams and have plans to work closer together to get the right care to the right patients at the right time.
Research helps us to learn the ways to do things right and it is core to our vision for the future.
I presented my research at the European Association for Palliative Care in Brussels recently .. so we’re able to share what we’ve learnt and bring it back to the hospice.
If you wish to discuss how we can improve and develop access to hospice care for all or are interested in our research programme, please do contact me email@example.com or you can find me on Twitter @shazzahudson.
If you wish to find out more, click here for our new programmes of care and research programme.