Published on: Thursday 01 Oct 2015 at 08:56
Musing on this year’s theme of ‘Connecting care’ for the national Hospice Care Week (5-11 October 2015) sparked thoughts flying in lots of directions since, in many ways, it sums up the very heart of hospice care.
Be it links between atoms to make matter or between notes to make music, there’s no doubt that incredible things happen when connections are made. Human connections, even for a few moments, are no less remarkable.
Connecting the physical, emotional, psychological, spiritual care of the person who is ill; connecting the care of the person with the care of their carer and whole circle of family and friends; connecting with supporters and the local community to raise the vital funds needed to provide the care and connecting with other health and social care professionals involved in the care of a person, all these connections happen on a daily basis at St Clare Hospice. I could write a thesis on the subject! But, fear not. I’ll focus here on two successful initiatives at St Clare which illustrate well the importance of connecting care.
One of the biggest challenges is connecting people to hospice care in the first place. Collaborations between St Clare and other healthcare professionals play a crucial role to make this as smooth and reassuring as possible. For example, St Clare Hospice and Princess Alexandra Hospital in Harlow run two joint-led outpatient clinics at the hospice: one for lung cancer and one for upper gastro-intestinal cancers, such as stomach, oesophageal and liver cancer.
For Valery, who attends day therapy at St Clare, the joint-led clinic was a vital stepping stone.
“I was told by Sara, my hospital oncology nurse, that she could refer me to St Clare Hospice. Even though I knew of St Clare because I’d attended a couple of fundraising things and donated to the Epping shop, I was horrified. I thought if she’s referring me to a hospice she must think I’ve not got very long, but I’m not ready to die yet. What I didn’t realise then is that a hospice is also a place to live and go on living with encouragement. I’d got it all wrong.
“The way Sara and the team at St Clare work closely together makes the care feel seamless. Sara knew it would be hard to get me to come. She didn’t force me, she laid down the facts. She just gave me no reason not to come! What made a big difference was that she came along to the first appointment my husband and I had at St Clare. To be honest, I may not have made it if she hadn’t been there. She was a familiar face in strange surroundings and I knew she’d talk me through everything.
“It was coming to that first meeting that I realised just how wrong I had been. What I discovered is that the Hospice is like a hotel or a retreat. It’s so relaxed. It’s a tonic. And there is so much fun and laughter! It has made the thought of dying so much easier knowing that I have got the support of St Clare. They have taught me how not to be afraid.”
Valery is not alone in needing lots of encouragement to make that first step and say ‘yes’ to hospice care. The fact that it is suggested by their hospital clinical nurse specialist, who they already know and trust, and knowing that they will see them at the appointment gives a sense of continuity and is hugely reassuring. It also means that a person is more likely to get an answer to any specific questions they have straight away because they have the specialist in their specific condition and the specialist palliative care professional in the same room at the same time.
Another example of connecting care through collaboration is the neurological support group run at St Clare Hospice together with Parkinson’s Clinical Nurse Specialist Julia Brown from SEPT Community Neurological Team. The group provides education and psychological support for patients with life-limiting neurological diseases, and their carers; conditions such as Parkinson’s Disease, multiple sclerosis, motor neurone disease and Huntington’s Disease.
Over six weekly sessions, the group explores a wide range of topics, including how to keep mobile, manage fatigue and anxiety, develop coping strategies to deal with the psychological and emotional impact of change and loss and sources of help on financial matters.
Richard, a member of our most recent group, explains the difference the group has made to him:
“My diagnosis in 2013 hit me hard and when I was initially referred to St Clare Hospice by the specialist Parkinson’s nurse, I was feeling more and more depressed and had started becoming somewhat withdrawn. Having been introduced to group-based discussions and exercises in the day therapy programme, I was invited to attend a six-week course specifically for patients with neurological diseases, and to bring my carer too. In my case, my wife. The neuro group was very helpful in introducing me to fellow sufferers, and for us to share and discuss issues which were (or were likely to become) common ground. I found it helpful to have access to the different specialist skills and experience that St Clare staff and the Parkinson’s nurse have between them. They know their patients very well and therefore can identify when an issue or reaction is outside the normal pattern or range of responses. This is healthcare at its best being specific, expert and supportive without being hurried or threatening. It’s helped me to learn to walk a new path.”
It takes time to establish a joint initiative like this, but it is so worthwhile. Once a person has been diagnosed with an incurable neurological disease, they will be connected to a clinical nurse specialist (CNS), who is the expert in that particular condition.
When a person’s needs become more complex, be that physically, emotionally or psychologically, then the benefits of specialist palliative care that we provide here at St Clare Hospice comes into play. It’s all about teamwork with the different people involved in the care of the person working really closely together, be that their GP, district nurse, consultant or CNS. We share information and keep each other informed, recognising the skills and responsibilities of each other, so that the patient receives all the care and support they need to live life as fully as possible.
It’s the only way to make sure the different aspects of a person’s care are truly connected. Having worked with Julia for five years, we know each other really well and learn from each other. Patients and carers see us together, actively working together. It makes them feel more safe and secure.
These are just two examples of how we strive to find ways of connecting care to improve the lives of those facing one of the hardest journeys in life.