CHIME

132 billion pounds = money saved for the UK by unpaid carers.

6.5 million = number of carers in the UK.

6000 = number of people who become carers every day.

1 in 8 adults are unpaid carers for a family member or friend.

Carers UK call them ‘The Second NHS’.

Yet, do we or the Health Service truly value them? Listen to them? Include them? Give them a voice? Understand their concerns? Treat them as an ally? Respect their abilities and contributions? Answer their questions? Educate them? Empower them? Support them? Partner with them as well as we could? Sadly not.

In my experience and that of many other families of individuals with a mental illness, the power imbalance between the health care providers and the service users does not allow for an equitable relationship. Hence, denying the patient the best chances of recovery. There is national and local evidence that proves that carer engagement saves lives.

Triangulation of services is essential for best outcomes for patients and professionals. Risk averse practices may help reduce risk in the short term but may increase risk in the long term. A recovery approach to risk and development of a “life worth living” may have longer lasting benefits through rebuilding relationships, increasing service-users skills and confidence in collaboration with carers.

Norfolk and Suffolk Foundation Trust (NSFT) have developed a program called “Stepping Back Safely” up-skilling staff, carers and service-users. It is based on five main drivers of Recovery: CHIME

  • Connection
  • Hope
  • Identity
  • Meaning
  • Empowerment

NSFT are offering free training in Stepping back Safely in July 2021 on-line. Having heard many stories where a life could have been saved only if there was a meaningful and effective communication between the three parts of the Triangle of Care, I think this training is most relevant and essential. I shall be taking it as I am sure it will deepen my understanding of the subject. If you or anyone you know might like a point of contact, here it is: catherine.phillips@nsft.nhs.uk

Changing the Conversation.

First versus second.

Medical versus human.

Symptoms versus experiences.

Problem-based versus Trauma-informed.

Here is an example of language, describing the same thing in two different ways.

First:

“I was 15 when I started to suffer with mental illness. I went to see a psychiatrist who told me that I had something called Schizophrenia. For a couple of years my symptoms got really bad and people were afraid I was going to hurt myself so I was hospitalised. They stabilised me on meds and shock treatments and sent me home. For a long time, I didn’t get sick again.

Later, as an adult, I started to get symptomatic again. I got pretty psychotic and once again got put in hospital. They told me there that I was really sick and should go on disability. For a long time, I was pretty sick but then started to be able to manage my symptoms.”

Second:

“I was 15 when I started feeling different than others and really alone. For a couple of years after that, I would do things in pretty extreme ways. They made sense to me based on what I was thinking and feeling but I guess it was scary for others who didn’t really understand what I was thinking and feeling. I got put in a hospital. There I really lost hope and beliefs about being a ‘regular’ person. They put me on a lot of medication that made me sleepy all the time. After I left, I threw out all the meds and put my intensity into music.

Years later, coming out of a difficult marriage I started to have similar kinds of experiences as the ones I had as a kid. I had really strong feelings and felt pretty separate from others. I got put back in the hospital again. I was told I had a major mental illness and that I should go on disability. Though I did that for a while, I realised that I was just going along with their beliefs rather than looking at how I’d come to think in certain ways. Little by little, I figured out what to do with my intensity and I’ve been really growing ever since.”

Each one of us is simply at a different place in our growth and development. Using language that is personal and descriptive of our experiences enables shared understanding. It forces us to think of ourselves and others more broadly as human beings, free of labels and assumptions.

Reference:

Intentional Peer Support: https://www.intentionalpeersupport.org/?v=79cba1185463

Working from the heart.

I had taken the day off work. The nurturing, peaceful, green lap of Amaravati Buddhist Monastery at Hemel Hampsted was where I wanted to be. It was a day of rest, solitude, silent contemplation and meditation. Autumn was at its prettiest best and despite everything, it was time to receive beauty. Receive time.

It was the fourth anniversary of Saagar’s passing. The most difficult day of the year, despite my belief that time means absolutely nothing. But this day always stares at me like the enemy. A wretched, horrid, cruel, ugly thing. A brown sludge that I have no choice but to drag myself through.

Slowly, slowly … most of the day drew itself behind me. I returned home, gazing at the sky from the train window, still looking for answers. Still nothing. Just the unbearable pain of longing.

Switched myself back into practical mode, as the next day I was meant to be working. Opened my inbox and found an e-mail from someone called Dan.

“I hope you don’t mind me contacting you out of the blue like this, my name is Dan, I’m a third year medic at Aberdeen University and also the Vice President of the Anaesthetics Society. 

I actually attended your talk at the AAGBI conference this summer. I hope you don’t mind me saying, but I found it incredibly moving. The very day before I attended I had been diagnosed with Bipolar Disorder and was worried about how this would indeed impact on my studies and working career as a Doctor. 

After your talk, I met with one of the Consultants who was offering a ‘mentoring’ session where I discussed the recent diagnosis. She spoke to me about what I need to do to stay well, one of the things was accepting treatment, which initially I admit I was not that open to doing. 

Anyways, I find myself rambling on, I suppose I just wanted to email and introduce myself. If you have any advice for someone with Bipolar who is wishing to pursue a career in Anaesthesia then I would love to hear it!

I just saw an email which was saying that you are giving a talk in Aberdeen next week about this particular topic, which I certainly hope to attend! If you would be about afterwards and free for a coffee I would certainly love to meet you!

Best Wishes and sorry again for emailing like this out the blue!

Kind regards,

Dan.“

Another green moment – tears mixed with joyful smiles. What a way to end the day. What perfect timing.

We met in Aberdeen a few days later. He was all smiles. Friendly, generous and sensitive. We got on instantly. Had a nice long chat. He dropped me in his little red car to the airport. I told him I was hoping to write a book at some stage. He offered to help me with the research that might be needed.

Last week, I was back there in Aberdeen at Dan’s request, to run a 2 hour-long Mental Health Workshop for a bunch of medical students, junior doctors and researchers. It was a good day. I had to smile when Dan talked about Saagar as if he was an old friend.