Pandemics old and new

“A one-way road to freedom”. 

This is how Boris described his roadmap for the lifting of lockdown measures as he said spring was on its way ‘both literally and figuratively’. 

It's light at end of the tunnel, even if it feels like a long tunnel! There is a lot of understandable caution in the wind and it’s still probably going to be at least another six months before it feels that everything is back to normal.

It’s so hard to believe it’s been a year. No-one could have ever predicted this and I’m going to say again that I appreciate just how tough it’s been for you all, whatever your experience.

It’s been stressful and difficult for frontline staff who have faced daily anxiety about catching and spreading covid, whilst wearing uncomfortable face masks and PPE. It’s been challenging and isolating for staff working remotely, hunched over make-shift desks with sore backs, eye strain and zoom fatigue. Some of you have been trying to work while looking after your kids at home, have been terribly ill from the virus, had the immense pressure of having to shield or faced tragic loss and grief.

It’s been such a tough year and it’s a miracle that you have managed to keep going and make it through even if we are emerging somewhat knackered and emotionally drained.    

It feels as if our whole lives have been on hold in this weird groundhog day world and that we’ve had a year of ‘standing still’ to some extent. But, your phenomenal work actually tells a very different story. The numbers are amazing and show that far from being stuck, you’ve managed to make great strides forwards with your undisputed determination and ingenuity taking on every obstacle.

Since the pandemic started you’ve cared and supported around 100,000 people; selflessly and compassionately providing the highest quality care to help others. You have saved and changed lives.

You’ve held 9000 remote consultations using Attend Anywhere with patients, equivalent to around 7000 hours. You’ve set up a 24-hour patient and carer helpline and been part of rolling out the largest vaccination programme in our history, administering thousands of vaccines to staff in just weeks. Our clinical support services have kept the wheels on the bus in so many ways, helping people who use our services, helping people to work remotely and supporting our programmes of change. And much, much more. I could not be more impressed or proud.

When we went into lockdown a year ago I talked about living in Eyam, the infamous ‘plague village’, in my blog. As a nightmare tale from history, Eyam's ordeal takes some surpassing and is a poignant story of sacrifice. When the great plague arrived in 1665, rather than flee this wild corner of Derbyshire - and risk spreading the infection - villagers locked themselves away to suffer in isolation. And suffer they did. For 14 months infection ravaged the village and 75% of the population lost their lives.

Pandemics are not new to the human species — they're just new to those of us alive now and who’d have thought a year ago the whole country would have to do what those brave villagers in Eyam did hundreds of years ago.

At the beginning of the pandemic last March, the BBC's Fergal Keane visited our village as we braced ourselves for the difficult times ahead. He interviewed 96 year old Sheila Vypan, who not only lives up the road from me, but whose grandson actually works for Pennine Care in our mental health services. He got in touch after last year’s blog to let me know his grandmother was a neighbour. Small world.

Anyway, BBC reporter Fergal Keane returned to our village this week to do a ‘year on’ follow-up piece and spoke to Sheila again to see how she was coping. He asked what her secret to staying happy was and Sheila replied, “Being in the present, trying not to think too much of what might be or what has been. But just taking it in, all that’s here now, and making the most of it”.

I just love this sentiment. Yes, the roadmap out of the pandemic means we can start thinking of the future and looking forward to things like holidays and we do need to think about what the roadmap means for us as an organisation and how things might change over the summer and autumn as we return to more normal life. But we still need to manage the present, take one day at a time and not worry about what we can’t currently change or control.

We will eventually get to the other end of the tunnel and to a better place, but in the meantime, if we can find ways of just taking each day at a time and valuing what we have now, then we might find it easier to get through.  

And when we come out the other end, we won’t go back to exactly what we were doing before, for example, we will continue to support staff to work in a more agile way, both in work places and at home, so we can create extra space for other things, for example, in our Trust HQ building. What this agile working looks like will be down to what works for people who use our services and what works for individual staff, with no expectation that we will go back to working in exactly the same way we did previously. We need to be creative in finding new ‘blended’ ways of working that builds in the advantages we have had from remote working but with the undoubted benefits of seeing each other in person more often.

When the great plague was happening those many centuries ago, Sir Isaac Newton fled his cramped apartment in Cambridge where he was studying for the safety of his family home in Lincolnshire.

His family had a large garden with many fruit trees, and in those uncertain times, out of step with ordinary life, his mind roamed free of routines and social distractions. And it was in this context that a single apple falling from a tree struck him as more intriguing than any of the apples he had previously seen fall. Gravity was a gift of the plague!

You see, there is an opening for previously unthinkable change, not only for the big societal and organisational stuff, but also in countless small ways – privately, personally.

We have lived for months at close quarters with ourselves. We will have deepened our appreciation of some of the simple things we have missed, and some of the pleasures that have helped us through, even if it is only the taste of a new season apple. And in some measure, one year on, we surely know ourselves so much better.

Best wishes

Claire

You can follow me on Twitter @ClaireMolloy2

It's a Sin

Claire Molloy (top) and
Jeremy Bentham (bottom)

An unknown deadly virus, misinformation, fear and uncertainty about the future. 

No, amazingly I’m not talking about covid, but the AIDS crisis in the 1980s.

It’s LGBT+ History Month and I’ve just watched Channel 4’s most binged series of all time - It’s a Sin. It beautifully chronicles the lives of gay friends living in London during the ’80s, with humour and humanity at its very heart. It’s a rare series that is as full of love for its colourful characters as it is sick with anger at the society that failed them. If you are still to watch it, keep your box of tissues close to hand.

I remember this decade well and the awful government AIDS adverts featuring an apocalyptic volcano erupting under a darkened sky and the words ‘Don’t die of ignorance’ chiselled onto a tombstone. These ads were deliberately meant to strike fear into the hearts of the nation, but they also fuelled prejudice and stigma in an already homophobic society.

I joined the NHS in the early 90s and my very first job was working in a GUM sexual health clinic where one of the teams I worked with supported people being tested for the virus. I remember very caring and committed colleagues who were doing a good job, but you could still feel a sense of judgment.

It’s interesting looking back 30 years later and remembering that the main focus then in the service was on contact tracing - a ‘track and trace’ style programme as we now have with covid. I remember much less attention on the psychological impact of testing positive for HIV, which would have been such an enormous and distressing thing.

It’s a Sin expertly depicts how shame, nurtured by a homophobic society allows the virus to flourish and intensify the crisis. It was even labelled the “gay plague” and this cast a large shadow on that community, meaning that many people suffered in silence especially in their last days of life, as shown in the series. Heart-breaking and hugely sad.

Fake news, false facts and conspiracy theories weren’t invented recently. They ran riot with AIDS in the 80s.

It feels as if things have thankfully moved on, but as with so many things we still have a way to go. I still see some of the same prejudice and bias now, especially for the transgender community as there is still such a lot of ignorance amongst us.

The theme for LGBT+ History Month is mind, body and spirit and it's an opportunity to increase the visibility of lesbian, gay, bisexual and transgender (LGBT+) people, their history, their lives and their experiences. It’s so important we celebrate the wonderful diversity of the human race, but critical that we reflect when we have treated people poorly so we can change what we do in the future.  

And still on the subject of excellent TV programmes and highlighting prejudice, I was also hugely impacted by The Truth about Disability Hate Crime. This heart-wrenching BBC documentary tells harrowing testimonies from a group of disabled people who face name-calling, physical violence and intimidation in their daily lives.  

It was distressing and depressing to hear their stories, from a wheelchair-bound former nurse being abused relentlessly after she was accused of being a benefits cheat to a blind woman made homeless after becoming a 'target' for muggings in the local area. We also heard from Andrea who faced unprovoked verbal and physical attacks as a result of her dwarfism. She said it was 'rare' for her to be able to leave her home without some form of abuse and that, “every day when you get dressed you don’t just have to put your clothes on, you have to put your wrestling tights on as you have to prepare for a battle.” I can only imagine how exhausting and stressful this must be.

The programme also featured a young man with autism who was left with suicidal thoughts after being a victim of mindless brutal assaults. I was shocked by the routine aggression and abuse they have to face and we clearly need a widespread change in attitudes.

We launched our learning disability strategy yesterday and this focuses on the way we support and see people with learning disability in our society, and aims to maximise their potential. I’m therefore so pleased that Jeremy Bentham, who heads up our learning disability services, has kindly done a guest blog this week.

While disability is, undeniably, a personal issue, it is also a societal one. We need changes in our society to allow everyone to feel a valued part of it and to be the best they can be. We are all different and we all have things that make us unique, but we all fundamentally want to fit in. To have friends, to be loved, to be valued and to be able to live our lives without feeling fear from others.

This is all of our right and we need to stand back and think about the sanctity of human life; and about the type of society needed to protect everyone.  

There is no greater disability in society than the inability to see a person as more.

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Guest blog – Jeremy Bentham, learning disability directorate manager

It’s the early 90’s and having just secured an ‘ology’ on the banks of the Mersey, I was on the lookout for employment.

As they do, an opportunity popped up through a friend to work with three people with learning disabilities living together in Middleton. The job brief was pretty straight forward, as a support worker I was asked to get to know them and help them enjoy the things they enjoy.

Similar to many of our career pathways this was the start of a road that wasn’t driven by ‘burning ambition’, it was simply my gentle introduction to the lives of three men living on a back road in Middy.

All three of these people had ambitions of their own, which ranged from falling out of a club at 2am, finding friends to getting a job. Throughout our time together and despite some persistent challenges, these reasonable ambitions didn’t waiver.

Following a trial and failure, failure, failure approach, we eventually shared the joy of rising for work at silly o’clock and leaving the Carlton club at 2am using the escalator, also known locally as ‘escalator to heaven’. It was really the small things that made a difference in the end to their lives, the bouncer who knew queuing was anxiety provoking and let us straight in, the patience of the bar staff, the friend who knew how to listen and when to leave and the employer who didn’t mind a late start (as long as the hours went in).

In comparison to the absolutely awful life experiences these men had endured characterised by decades of institutionalisation, isolation and abuse, the small inroads we made together might seem insignificant. I like to think that these and others experiences made a difference within that space and moment in time, however I can’t honestly guarantee that they did in the long run. I can only really attest to the impact meeting these people had on me.

Their resilience and refusal to compromise on personal ambitions inspired me to see what else I could do, as a result I’m all trained up and pretty much in the same job 30 years on. Sadly the Carlton has now closed.

This month we launch our Pennine Care learning disability plan. We have developed our plan from listening to people with learning disabilities, colleagues, self-advocates and families.

To some our ambitions may seem modest, however they reflect the modest ambition of most people with learning disabilities to have an life experience free from stubborn inequalities. Our plan is really about the whole of Pennine Care, not just the bits we might usually think of when discussing how we support and care for people with a learning disability.

Our plan needs momentum, as a starter for 10 it would be great if everyone, both corporate and clinical, took 5 mins to cast an eye over the plan and consider ‘the small things that might make a difference in the end’.

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Best wishes

Claire

You can follow me on Twitter @ClaireMolloy2