27 March 2024

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Responding to Marie Cooper “Do you feel safe in our care?” 

Marie’s article resonated with me. As an inpatient 6 years ago, I still remember there were times when I felt vulnerable and unsafe in my experience of care, which is something Marie expressed as a feature of her care. I use Marie’s own reflections as a reference.

Peter Ellis- retired, chief executive, Richard House children’s hospice, East London

Peter Ellis working at his recovery in the gym – March 2024

I trained as a nurse in Sheffield qualifying in 1983. I completed the degree course at what was then Sheffield City Polytechnic (now Sheffield Hallam University). My cohort (only 11 of us!) were the first students in this newly established degree programme. The programme focused a lot on health, before considering illness, models of nursing, psychology and ethics as well as the requisite clinical and scientific aspects. I remember we started by considering health (rather than disease) taking time with health visitors and social care professionals as well as visiting places of work such as factories and going down a coal mine crawling along the coal face. All of this to begin to understand the impact the work place has on our health. It was an amazing experience!

After 3 years of working as a qualified nurse I took up management positions in the NHS, including cancer services at Barts and the London. I finally took up the post as chief executive of Richard House Children’s Hospice which I established and had a great passion for.  I took early retirement in 2017. Then, 6 months later I had a massive stroke and nearly died. I had neurosurgery to drain the bleed in my brain (the thought of my head being opened up still fills me with horror!). I was in hospital for 6 months (including rehabilitation).  I have had a learning experience on both sides of the professional/patient divide. 

I have been left with a severe left sided weakness with no use of my right hand and arm, neuropathic pain, subluxated shoulder and a dropped foot. After discharge I developed epilepsy, had a total hip replacement following a fall, requiring a further 6 weeks in hospital. A number of other falls resulted in 2 more fractures (pelvis and shoulder). It has been a harrowing journey but once home you are left to get on with it, you feel “dumped”. 

Stroke is a terrifying experience and something I will never forget, and it has left me with a new but unintended life. On some days it can feel like a “living death”. I experience a deep sense of pain because of my loss. 

In my view stroke does not have the same profile in comparison to other conditions such as heart disease and cancer. I consider it to be an overlooked condition. Whatever the condition and remembering my introduction to nursing, it is health rather than disease that needs to be focused on, with an aim to live an ordinary life. I believe hope, meaning and purpose are some key determinants to any form of recovery. This is a big challenge but perhaps something nurses can help patients with.

Marie’s article resonated with me. As an inpatient 6 years ago, I still remember there were times when I felt vulnerable and unsafe in my experience of care, which is something Marie expressed as a feature of her care. I use Marie’s own reflections as a reference.

Creating a sense of safety in our nursing

At first, I felt completely out of control, incredibly vulnerable and terrified that I might have another stroke. I often felt very unsafe but did not have any real opportunity to talk about my fear and the massive sense of shock and loss. The only time I had to talk was when I was visited by the psychologist, but this felt “official”.  I do feel strongly that nurses have an important role to play in listening to patients about their concerns, anxiety, loss and questions about the future. I have one memory when a nurse accompanying the doctors on their ‘ward round’ spotted me becoming upset and crying, so she came over and hugged me for a while. It was what I needed as it was about the acknowledgement and it was a kind, human response. 

Compassion is difficult to quantify and objectively identify but many (not all) know intuitively what it is and how it might be expressed. Florence Nightingale conveyed the need for compassion and today the NHS offers A “Compassion in Practice strategy” and the 6Cs values which just emphasises how important this is, which is not surprising. Compassion can be defined as the “sympathetic consciousness of others’ distress together with a desire to alleviate it”.

One evening I expressed my anxiety to a nurse who was behind her laptop on a trolley, as she carried out her drug round. The night was approaching and I was terrified. Would I have another stroke? With every headache, I became anxious. Would it happen whilst I was asleep?  The nurse told me “We all know about your anxiety Peter” as she walked away with her jolly trolly!  I wondered what had happened to the nurse sitting with the patient beside their bed? I felt too much out of control to challenge this as a “disempowered patient”.  I knew if I had asked for something practical such as a urine bottle or a bowl to brush my teeth, she would have called for someone to get this for me but to take time to return to talk with me after the drug round, would have been welcomed on my part.

I did ask one of the care assistants if they had been given any training about loss and grief and how to deal with it and she told me nothing like that had been offered. I wondered how they dealt with the loss patients might express given there was a ward full of people who must have been in deep shock like me and in need of some support in their grief and anxiety. I felt they could not properly appreciate the extent of the emotional and psychological impact on me. I wondered if this might affect the quality of care, not least because they had to absorb this grief and this might be detrimental in their care giving.

It appeared to me that nurse’s recognition of and offering support around loss, grief and managing deep sadness (certainly in my experience) was not very available which is surprising considering the fundamental experience of loss following a stroke. I felt there was room and scope for ongoing learning about managing loss, grief, and dealing with death and dying.

The need for connection

I was surprised that most of the care was carried out by care assistants and I wondered, again, where were the nurses? They gave the impression to be hiding behind their computer trolleys and focused on distributing medication. On reflection, I appreciate their pressure was to manage the heavy workload, including the demand for beds. 

However, I also wonder if they were defending themselves. Defence and occupational burnout are common features in a care environment.  My question is could they be hiding from being exposed to the constant expression of loss and grief? They might find it difficult to deal with it themselves, let alone supporting others experiencing the same under their supervision? Assuming this was the case then regular skilled supervision and other forms of support for example, the introduction of some form of Schwarz round[1] (or similar) might be a positive way of managing the emotional impact.  This can be used for the whole team including nurses, physiotherapists and doctors amongst others. This type of support, to be effective, must be a mandatory requirement, and this in itself would be a significant change in practice, which can be resisted. I know this form of supervision was a challenge to introduce 25 years ago when I managed cancer services.

This also raises questions about the capacity to make this supervision and support available.  How realistic is it?  Will it require additional staffing?  This we know will be difficult in the current environment of stretched resources not just in funding but also the ability to recruit suitable staff.

Apart from not dealing with my loss and grief, no one talked with me about setting goals to work towards. It was only when, at my request, I worked with the physiotherapist to do this with me. We agreed to some short-term goals (e.g. standing up, walking, taking a ride in my car, going out for lunch at the nearby garden centre).  The stroke consultant on her rounds was surprised to see them pinned on the wall beside me. She commented about what a good idea this was. I finished nursing nearly 40 years ago, where a lot of attention was given to models of nursing care which included setting goals. I wondered what has happened to this?

Reducing stress and anxiety

Probably in defence of my horrific predicament, having fun, making jokes, giving out nicknames to the care assistants, to suggesting we sing together in the shower, all distracted me.  A technique I used which is in part due to my ‘can do, cup half full’ attitude personality, but of course not everyone is like me and even then, this distraction activity does not work when I feel especially low.  Dealing with the consequences of a stroke certainly in the immediate post stroke period, is so important. It is a period of time you cannot forget, and it is certainly a period to be managed carefully.   

Would I ever recover?  6 years on I have made some progress, but no one talked with me about how long it would take to gain some recovery but it was certainly not made clear that I would never gain full recovery and crucially how I could understand how to accept this. Where was the honesty to talk with me? Maybe it was considered too early to talk about it, and it might have been seen as being unkind? If this was the case then who would pick this up with me once discharged?  My disability and pain (physical, mental and spiritual), is likely to remain for the rest of my life. At times this is difficult to bear.  It is a documented fact that men in their 50’s who have had a stroke are more likely to commit suicide.  I have on occasion considered this.

Building rapport

The relationship between the patient/client and nurse/therapist is so important as you set out on the journey towards living your life in such a new, unintended way. The relationship has to be authentic and effective in order to gain any positive therapeutic impact. A year after discharge I attended a gym for those with disabilities. I developed a great working relationship with both the physiotherapist and personal trainer. This, for me was incredibly helpful as the exercises became fun (otherwise they can be deadly boring and painful!), and we had conversations, some with humour but some more serious about my predicament, acknowledging the long-term impact of my immobility and loss of independence. Whilst at times I would find this difficult and painful to hear and digest it was important. It is not every physiotherapist or personal trainer who are able to do this but for me I found it incredibly helpful as I consider my long-term future. Managing boundaries need to be considered but we discussed this along the lines of meeting half way up to the boundary. I have revealed a lot about me so, to make this equal should the caregiver/therapist open up something about themselves. Some professionals would struggle with this as it possibly blurs the boundary. My question is could this work as long as this is managed safely and in the right circumstances? Maybe I am being too radical?  This needs a lot of consideration and debate.

My conclusions:

What I have learnt is being confronted with a life limiting condition or in my case a life changing event such as a stroke  is a terrifying experience. It is therefore crucial to in addition to providing physical care for the nurse to be sensitive to and  support the person and their loved ones in dealing with shock, loss and grief.

My response in what I experienced is that those nurses working in support of people encountering such loss, should be mindful to:

  • Recognising the need to take up training and development in handling loss and grief.
  • Knowing how to understand and how to contain and manage the impact on them as well as those other staff they manage and support.
  • Consider building in time for sessions (e.g. Schwartz rounds) to deal with the emotional pressure placed on staff.
  • Developing our approach in working across the boundary between the health care professional and the patient

As a former nurse but also as a chief executive responsible for an organisation offering support of children and young people with complex conditions and disability along with their families, my recent experience opens my eyes about how vital nursing care is in offering support to in dealing with and managing loss and grief and I continue to come to terms with the loss of my intended future and my independence.

I am persuaded that this creates a chance, not only to benefit patients but also for nurses to gain a real sense of fulfilment in their work.

Read Marie Cooper’s original blog – “Do you feel safe in our care?”

[1] A schwarz round is a facilitated forum for healthcare staff to reflect on the emotional aspects of their work with the aim of building a compassionate culture.

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