A friend of mine is in hospital. She doesn’t have dementia, she is fully able to express her choices and influence her treatment plan, but she isn’t very well and feels vulnerable. Since she has no close relatives, a small group of friends (including me) are, in effect, her family, however we are struggling to play a meaningful role in discussions about her condition and her care. It is perplexing to know who to talk to; it’s difficult to track down the relevant professional, the keeper of the most up-to-date information, the person with decision-making authority. The ‘system’ isn’t transparent.
If this is our experience with a patient with full capacity; how much more difficult it must be for people with dementia who are in hospital. The need for advocacy and representation cannot be overstated.
This is why Nicci Gerrard and Julia Jones set up John’s Campaign: for the family’s right to stay with people with dementia; for the right of people with dementia to be supported by their carers.
John’s campaign is named after Dr John Gerrard, Nicci Gerrard’s father. John was diagnosed with Alzheimer’s in his mid-seventies. He was admitted to hospital in 2014 to be treated for infected leg ulcers which were not responding to anti-biotics. He was there for five weeks and the impact was catastrophic.
“On admission John was strong, mobile, smiling, able to tell stories about his past, to work in his garden and help with things round the house. He was able to feed himself, to go the lavatory, to keep clean, to have a good kind of daily life. He came out skeletal, incontinent, immobile, incoherent. He required 24-hour care and barely knew those around him. He wore a nappy, could not stand up or walk, could not lift a mug to his mouth or put words into a sentence” (Nicci Gerrard).
John’s family feel certain that if he had been cared for holistically in hospital, with attention paid to his needs a person living with dementia – not simply a clinical case – his quality of life going forwards would have been very different. As it was, he didn’t regain his mobility and strength, he didn’t recover his conversational skills, his rehabilitation was minimal, and he died nine months later.
Time and money are often said to be the reasons why care falls below expected standards, and I am sure that these are significant factors. The nurses are certainly very busy on the ward where my friend is, and there are many competing claims, with patients being admitted at all times of day and night, often in a very poor state of health. However, compassion costs nothing. It is an attribute and skill that some healthcare staff seem intuitively to have, and others not. ‘How am I making this person feel?’ should be a consideration that is central to every communication and intervention with a patient.
My friend has been an in-patient for six weeks. The care provided by most nurses and healthcare assistants has been excellent, and in some cases, exceptional. Their ability to take a ‘whole person’ approach, to consider how my friend is feeling when receiving intimate care, is evident.
However, I have also witnessed professionals’ attitudes and behaviour that have made her feel like she is a burden, that her requests to have her incontinence pads changed are inconvenient, that she is not trying hard enough to regain her mobility. Some of the language used has been disrespectful and punitive. In my view, this is unacceptable.
Dr Kate Granger MBE started the #hellomynameis campaign with the aim to improve patient experience. Kate was a qualified geriatrician when, at a young age, she developed a rare form of cancer. As a terminally ill patient, Kate made a stark observation, during a hospital stay in August 2013, that many staff looking after her did not introduce themselves before delivering care. She was frustrated and angry that this basic step in communication was missing.
Encouraged by her husband, Chris Pointon, she decided to “stop whinging and do something”. With Chris, Kate started the #hellomynameis campaign, to encourage and remind healthcare staff about the importance of introductions in healthcare. She used her personal blog and social media updates to share her experiences of her illness and gain support for #hellomynameis.
“I firmly believe it is not just about common courtesy, but it runs much deeper. Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances” (Kate Granger).
Kate sadly died in July 2016, but not before her campaign had gained significant traction. Hospitals and care providers across the nation, and globally, have signed up to the #hellomynameis campaign and resources are available to download from the website. The ‘Kate Granger Awards for Compassionate Care’ honour her tireless efforts to raise awareness of the need for compassion within the NHS.
Chris is continuing the #hellomynameis campaign in memory of his wife. Just today he posted on social media about the refreshed #hellomynameis website, which now features the core values that underpin the campaign. Click here to take a look.
My friend is being discharged tomorrow. She is still unwell, but there is no clinical reason for her to remain in hospital. This is the right course of action. She is moving into a nursing home for respite and convalescence. I am really hoping that the experience is good for her, as it will make all the difference to her recovery.
Unforgettable has published a book called ‘Staying out of hospital when you have dementia, which is available to purchase here and as a free download here. Written by Danielle Wilde, a leading Occupational Therapist with 10 years’ experience working in dementia care and neurology, this book provides a helpful guide to reducing the risk of hospital admission and offers tips and advice to on keeping people with dementia safe and healthy.
If you have in-patient experiences (both good and bad) to share, or if you are a professional leading an initiative to improve patient experience of staying in hospital, please do get in touch. I can be contacted by email as firstname.lastname@example.org or by phone at the Unforgettable office.