Learning disability and end of life care: How a pioneering spirit fought for equity of care –
Gemma has worked as a learning disability nurse for many years, advocating for people unable to speak up for themselves. After noticing a failure in the system to recognise and understand the end of life care needs of this cohort, she completed a master’s degree in inequalities in palliative care. Subsequently she’s worked in roles combining being strategic, working in a clinical setting and teaching, which has enabled her to influence care that not only that she provides but other services across the organisations in which she has worked. Gemma has developed a national profile within her specialism, presenting at conferences and developing practice guidance which are accessed nationwide. Gemma also undertakes consultancy work with the British Institute of Learning Disabilities which has involved creating an educational module of delivering end of life care.
“Always when I recognise there is a gap or a need I have to advocate it. A challenge doesn’t put me off, it’s just something to overcome and it drives me to put it right. I always think, ‘if I don’t, who will?’”
A visit with a community nurse colleague to see a woman with downs syndrome who was in advanced stages of dementia had a profound effect on Gemma. In front of the woman’s sister the community nurse said that they didn’t need to put any anticipatory medicine in place because ‘people with downs syndrome die in their sleep’. Gemma says she has always been on a mission to ensure those in need get the care they need and it is their right to receive high quality end of life care and a ‘good death’.
It’s in Gemma’s current role that she is having the greatest influence. She has developed three learning pathways across two health trusts delivering education on frailty, end of life and dementia.
After a recent promotion, Gemma also now works clinically alongside the training lead role, after working to set up the Dementia Palliative Care Team in which she is the Clinical Lead Nurse Specialist delivering and leading palliative and end of life care for people with advanced dementia. ‘Change has to come at a service level and can’t rely on individuals alone’ she says.
What drives you to make a difference?
“It’s always been a dream to have a role that focused on palliative care but for vulnerable groups that often slip through the net. It is something I am passionate about. As a learning disability nurse, you see the barriers and inequalities and it’s ingrained in you to make a difference and change those inequalities – to try and get equity of care.”
This recent initiative brought together community psychiatric nurses and district nurses for the first time. With the help of external experts, including geriatricians, complementary therapists and hospice consultants, participants have been collaborating and coming together to deliver multi-disciplinary training.
“I saw people with learning disabilities approaching the end of life not being recognised. That meant they weren’t getting the chance to say their goodbyes, to have care plans or to die in their preferred place of care. The specialist role is still in my heart to fill the gap to educate others in recognising the needs of people who don’t have cancer or other common life-limiting illnesses.”
How do you inspire others to have a person centered approach to care?
“Sadly, it is not uncommon for fellow professionals to fail to see the whole person,” Gemma says. She continues to join meetings with district nurses and says she has observed how, though skilled in many ways, colleagues have seen the person with a learning disability or dementia in a different way. Gemma believes that while this is in part due to a lack of education, it is first and foremost down to wanting to hear the voice of the person and learn of what is important to them.
“I always like to think it’s those small things that can make a huge difference. I originally started making small steps, but now it’s reaching a wider audience and can make a bigger difference. Often people don’t realise that the small steps can make a difference, but they really do.
Something that drives me on is people saying, ‘we do it like this because we have always done it that way’. I like to challenge that because it doesn’t mean it is the right way.”
For me it’s about challenging things and having the confidence and competence to do that.
Too often, Gemma says people put the emphasis on dementia, for example, rather than the person living with the condition. “We always think about labels when we should think about the person as a whole.”
Gemma is a nurse with a real commitment to improving and being involved in the delivery of high quality care palliative to the most vulnerable within our community and who often are at risk of ‘slipping through the net’ in terms of being supported to have a ‘good death’. Her tenacity for addressing such inequities is core to her vision.