Dancing the cancer dance

Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.

They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.

I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.

We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.

But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:

“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”

Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.

This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.

For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.

On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.

As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.

When will we learn? #safeguarding lessons

Over a week has passed since the Panorama exposé of practice at Winterbourne View. Run by Castlebeck the facility is described on their own website as “a purpose designed acute service, offering assessment and intervention and support for people with learning disabilities, complex needs and challenging behaviour“. I am not going to go into detail about what the film covered, you can still see the episode here and there have been several excellent blog posts and commentaries published. There has been a lot of outrage, a few apologies, a lot of promises and a lot of anger.

Reflections

What I thought I would just do was offer a few of my reflections on the programme – I’m not claiming these will be original, but they were what stood out for me:

1. Respect and Value As a society how much do we respect people with learning disabilities? What value do we place on their care and support – providing it in a building on the edge of an industrial estate. An industrial estate, seriously, how many of us would like to live on the edge of an industrial estate? I’m not sure what message that sends to the residents/patients/customers and their families and I’m also not sure what message it sends to the staff. If, as a society, we don’t show respect for and value people with learning disabilities, why would we expect the people who are paid the minimum wage to provide their care, to act any differently?

2. Boredom and underload The staff shown in the show were quite simply bored. They had too much time on their hands, they didn’t know how best to engage their residents and so they entertained themselves; as my Gran would say ‘Idle hands are the Devil’s playthings’. Rarely did the staff attempt to meaningfully engage the residents, and when they did they weren’t successful and got little feedback, so nothing would encourage them to persevere.

3. Aspirations The staff shown engaging in abuse at Winterbourne View were not people who aspired to be carers. One of them, Graham, had previously been the kitchen porter, I’m not sure how he came to be working as a carer but he certainly hadn’t applied to Castlebeck with that role in mind. One of the Senior Support Workers, the one referred to as the ‘ring leader’, Wayne, previously worked in a Young Offender Institution and had an ambition to open a tattoo parlour. These people were not people who aspired to be carers, that said they didn’t lack aspiration or ambition, but they were simply not doing a job that interested them. This relates to the earlier point about value, how much value do we place on care work? As a society do we value the work that Graham and Wayne do?

4. Isolation As an assessment facility, many of these residents were miles from their family, friends and support networks. These were not unloved, forgotten individuals though; they were not vulnerable and isolated residents with no support; they had supportive and engaged, loving families. However, the residents at Winterbourne View were kept on a locked ward, their families and friends never had access to where they lived, instead visiting in a visitors room. They were isolated by their situation.

5. Training These staff lacked training and support. They were working with people with complex needs, idiosyncratic communication, and arguably challenging behaviour. They were providing support for all of their needs. A lot of the media backlash has laid blame at the individual’s involved – and yes they should know better – but in amongst the awful behaviour there were attempts to engage with residents.

Wayne, who was so awful at times, was also the one who sat holding Simon’s hand (in the scene were the horrific abuse of Simone was the focus); on another occasion, before snapping and dragging a resident from her bed, he had knocked on the door before entering her room and greeted her with a cheery “morning princess”. In one scene he threatens Simon with flushing his head down the toilet – he has his head suspended above the bowl and as Simon screams his complaints, Wayne offers the reasoning that ‘this is what other people feel like when you give them bear hugs’ – at some level, Wayne’s behaviour could be interpreted as the attempts of a man who knows no better, trying to teach Simon a lesson.

Simon’s learning difficulties, and the difficulties of other residents, mean that they will not learn through tough love, no doubt the approach that Wayne’s parents or superiors took with him, would not work. I’m not so sure that he knows any better way of doing things.

I’m not suggesting that Wayne’s behaviour is forgiveable, but I do think he lacked support to do a better job. Remember this is a man who wants to run his own tattoo parlour, who has worked their for three years, who earns £16k a year, who has no qualifications for the role he performs.

Conclusion 

We know what needs to change. We should have learnt these lessons by now, at least with regards to institutional abuse. There was a reason why long stay hospitals were closed down in the 80s, we know what causes institutional abuse.

Two years ago, research in practice for adults published Safety Matters: developing practice in safeguarding adults - if you click the link you can see extracts from the Practitioner Handbook. This publication was the result of an action research project that I co-facilitated with Bridget Penhale (an academic and Joint Editor of the Journal of Adult Protection – alongside Margaret Flynn who will conduct the SCR for South Gloucestershire Safeguarding Adults Board), Paul Bedwell and Stephen Bunford from Essex Safeguarding Adults Board. We looked at the available research evidence, and combined it with practice knowledge about improving safeguarding practice, talking to professionals from across the country about their experiences and learning. The document, while in need of a refresh, still contains lots of information and ideas for practice. One of the checklists contained looks at pointers of institutional abuse, we should have been able to spot this, and prevent it, earlier:

I am delighted at the sense of national outrage in response to Panorama. I would be even more delighted if we could start by looking at the evidence we already have, and trying to use that to improve practice. As a society we have to ask ourselves some fundamental questions about how we value and treat people with learning disabilities and rather than pointing the finger at a few individuals uncovered by a journalist, we should ask ourselves what more or what different we could do.