Memoirs of a hospital advocate
As an independent advocate for people with dementia in an acute hospital setting I was the bloke with the awkward questions.who’d turn up on the ward and all staff would dive out of the way . that was 13 years ago. Only recently are the needs of people with dementia in hospital being acknowledged. Yet still the culture of blame and negativity prevails. It’s the people with dementia still ‘blocking the beds’ (perish the thought that they should ever have any acute medical needs too!)
What follows is a short extract from my experiences and the experiences of the people I came across. I am convinced we still have a long way to go. Why? Because on my nursing course all I remember was a brief session on older people with the message that they might get blue on their extremities in the winter. Nursing and social work curricula still have little more than an hour for students who then go to have jobs in this field. The reality of acute hospital care is still older people and we are still equally ill-equipped to respond to their needs.
Article Two of the Act talks of the right to life. I worked on the definition of life with ward teams. A lack of stimulation, the constant moving, the situation of so many so-called bed-blockers was surely no existence. I remember Bob the Welsh poet who was such a gentleman. His poetry increased with his dysphasia until only “scrambled eggs” -as his niece put it – came out. They were delivered with such an appropriate tone and bright eyes that he was easy to converse with. He was stuck in hospital, and although ‘medically fit for discharge’, he died. He became progressively more dispirited and shabby, left to spill yoghurt in a sticky mess, unshaven and never with his glasses. He coped for a while but faded away, denied life and banished to a pyjama-clad limbo for six months. Article Three of the Human Rights Act mentions torture and degrading treatment. I remember Mary whose bowel habits were broadcast across the ward, and who was blamed for having dementia (‘You did that on purpose’) and shouted at for being deaf.
On the hospital ward I paid great attention to detailing verbatim accounts of what some people with dementia have said to me. I stress on the wards that spending a short amount of time upon admission, gaining trust and providing reassurance to that patient will save time further down the line.
“Where are my people? Where is that special person? What has become of me?” These words were spoken by Ethel, who had been stuck on a ward waiting placement in long stay care. Stripped of all she had, she was not after food or water but rather human love and a sense of belonging. Care plans on the ward revealed the need to maintain hygiene, push fluids and toilet regularly. What Ethel in fact wanted was to have an impact on the world around her, to know she still existed and mattered. She was giving us the meaning of the “Essence of Care” –(now there’s a blast from the past!). There had to be recognition on the ward that every intervention was an opportunity to communicate and interact – an opportunity to let Ethel know she had an impact on the world around her. The Help the Aged “Dignity on the Ward Campaign” pocket guide for Hospital staff (2000) summed this idea up perfectly with a quote from a daughter about her father’s care.
“The staff made all the difference, everyone including the domestic staff took time to speak to my father and to see he had enough to drink and eat. He was awful at times and said terrible things without realising it…I felt that we were all in it together even though there wasn’t a huge amount we could do… but the attention to detail and to small things made all the difference, I’m sure of that”.
The above case shows how important it is to take the lead from the person. Entering into that relationship helps staff see beyond the shell of a broken body to the real essence of the person beneath..
I was at one particular case conference, which was opened by the social worker saying “Pat, you have no friends, you cannot cope at home so I’ve put you down for placement”. This meeting immediately degenerated as Pat quite rightly reacted to such a damning statement. Other meetings have taken place where it appears a decision about a person’s future has already been made. Staff were worried about discharging Helen home after a fall, for fear of a swift readmission and an accusation of unsafe discharge being brought against them. Helen herself had no interest in suing – she just wanted to be at home with her cat. Maggie was determined to return home after a fall, especially when she heard placement could take months. Staff had assumed she would stay in until placement could be arranged, hoping that her poor memory would mean she would not mind. Spending time with Maggie revealed she felt she had been “conned” into staying in hospital, especially over Christmas, which was a devastating blow. She spoke about risk and the fact that anyone could be run over by a bus tomorrow and that she deserved to have that right, to have that life giving experience of being back at home. The hopes and desires of Pat, Helen and Maggie at one point or other were completely taken out of the equation when their respective discharges came up for discussion. For all three of the above cases subsequent meetings were held, thus delaying discharge further -in one case by up to two months. Once again, simply communicating with the person shed light onto affairs, regardless of whether that person’s wishes could be fulfilled. There are still so many delays because we don’t start discharge processes prior to admission. I still hear of social work referrals being made to soon.
The Impaired Person’s Perspective
Just as I did 13 years ago I still find myself pointing out the need for detective work to find out why someone acts in a particular way -is it because they don’t like something they’ve been given? Is it because it is they are hot and uncomfortable? Is it because they are afraid of being incontinent? Is it because they are depressed and frightened? Is it because they are woken with a start and lash out in fear? It is also vitally important for staff to put themselves in the position of someone who is waking up to find a complete stranger trying to take their clothes off. How would they react? Far too often the result is the label of an aggressive patient and an even greater distance being created between patient and staff leading to further disengagement of the person with dementia. In fact this group requires more intervention to reinforce the fact that they still exist and have an impact on the world around them. What we still have is this self-fulfilling prophecy of people labelled as aggressive, non-compliant,
Attitudes and Beliefs
The culture and attitude I’m afraid has scarcely changed over the years; some of the following might ring familiar
There was Emily who shouted for the toilet only for the nurse to come into her room, stand right over her and tell her off for shouting when she should use the buzzer. She then picked up Emily’s catheter bag and waved it in her face saying “you don’t need the toilet, you’re attached to this”.
There have been countless examples of talking over people’s heads and the very frequent, “Oh you did that on purpose” along with the degrading labels of “bed blocker”, “aggressive” and “non-compliant” – all of which put the blame on the person with dementia. I have also had calls from consultants to “get rid of them” and pleas of “but they should be somewhere else.”
Till today the “somewhere else” does not exist so I tried to help wards take this on board – not to become specialist dementia care wards but rather to be confident to manage those patients who come their way.
The “Caring for Older People” report by the Standing Nursing & Midwifery Advisory Council (SNMAC 2001) highlighted the personal experiences of people in hospital and recommended better training and awareness of the needs of people with dementia. A starting point for this would be a basic ‘awareness of dementia in an acute setting’ programme for multi-disciplinary staff such as I ran at the time. At the start of the study day the overwhelming opinion was that “we have no time”. At the end of the day people went back to the wards with several ideas.
I remain convinced that we can work in a more proactive way. But progress is still painfully slow when we see the same old problems and limited joined up thinking. The standards of care of in-patients with a dementia as set out in the HAS 2000 report “Not Because they are Old”, The Help the Aged report “The Future of Hospital Care for Older People”, the SNMAC report, “Caring for older people” and, of course, the section dedicated to hospitalised older people in the National Service Framework are all over a decade old. The words of Professor Geoffrey Shepherd, the joint chief executive of the Health Advisory Service 2000 at that time seem eerily prophetic
“You can set standards ’til the cows come home – the issue is whether you can do
anything with them to improve services”
Prof. Geoffrey Shepherd – Joint Chief Executive of Health Advisory Service 2000
So many new initiatives and political drivers should not go the same way.
Health Advisory Service 2000 (1998) “Not Because They Are Old”
Department of Health (2001), “Caring For Older People – A Nursing Priority” Standing Nursing & Midwifery Advisory Committee. DoH, London
Department of Health (2001), “The National Service Framework for Older People” DoH. London.
Help The Aged (2000) “Promoting Excellence In Care- Dignity On The Ward Campaign” HtA, London
El hijo de Veronica