thank you

When I’m 94…(to the tune of When I’m 64 by the Beatles)

When the NHS was created in 1948, 64 was considered elderly. Both my grandfathers died during the 1940s aged 50 from what we now know to have been smoking related illnesses, having served in the WW1 trenches. My maternal grandmother died aged 65. My other grandma managed to last a bit longer; she died in December 1982 aged 79. 3 out of 4 died in their own beds at home.

I was born in 1955, a child of the NHS. I have worked in it since aged 18. The NHS was set up to improve the extremely poor health of the nation after World War 2, with clinics providing advice and free milk, vitamins, orange juice and cod liver oil, as well as weighing and measuring children, hearing and eye tests, free dentistry, and checking for lice, nits, scabies and rickets. A mass free screening and vaccination programme began for common killer diseases such as smallpox, diptheria, tetanus, polio and TB. Going to the clinic with my mother and younger brothers was fascinating and memorable. Providing care free at the point of delivery to people who were sick or injured was a massive bonus for the public, but its wasn’t intended to be the main aim of the new NHS.

Despite these wonderful founding principles, the NHS quickly began to increase its focus on treating sickness. The status of hospital medicine has always been greater than public health or primary care; this continues today. Radical health promotion initiatives such as the Peckham Experiment sadly closed down before they had a chance to prove themselves.

I trained as a health visitor in 1978, having been inspired during my hospital nurse training – in 1975 I went out for the day with the local health visitor. As well as admiring her cream Morris Traveller and adorable spaniel puppy, I will never forget one visit. In a tiny cottage in a village outside Cambridge, we called on an elderly lady. I remembered her in hospital after a massive stroke, lying with her face turned to the wall. Back home, despite needing two sticks and very limited speech, she ushered us into her cosy kitchen, all smiles, and made us tea and biscuits while her cat snoozed on the sunny windowsill.

Community services (those outside hospital that either help people to stay healthy or look after them at home when they are ill or dying) and mental health services have always been the Cinderellas of the NHS. Never more so than in the last few years, when they have experienced unprecedented cuts in order for commissioners to continue to pay for increasingly sophisticated physical hospital interventions.

Today I have a lovely gig: joining 100 or so folk from the NHS and social care system in Kent, Surrey and Sussex, all of whom want to improve care for older people. It is organised by the KSS Academic Health Science Network. Life expectancy in Kent, Surrey and Sussex is the highest in the UK. Were it not for pockets of significant deprivation along the Kent and Sussex coast, and the appalling fact that people with serious mental illness live 20 years less than the population average (25 years less than the KSS average), it would be even higher. It is common for acute hospital wards to be entirely populated by people in their mid 90s and above. The people attending the event know things have to change. Medicalising old age is cruel as well as extremely costly.

It is, fortuitously, Dementia Awareness Week and Dying Matters Awareness Week. I know from the research of my brilliant ex-colleague Professor Sube Banerjee that only 18% of people who have dementia only have dementia. The majority have between 2 and 7 other significant health conditions that seriously affect their lives. The way we run the NHS is simply not serving their needs, despite very elderly people being its majority users. I also know from the wonderful work of organisations such Dying Matters that these days, most people die in hospital despite very much preferring to be cared for at home.

Today, we will be encouraging the people at the event to face this enormous challenge together. We have to do things differently. It says so in the Five Year Forward View. The attendees at this event are to some extent, like those involved in the vanguard sites across the country, the converted. But even they will have to throw away beloved ideas and think the unthinkable.

I am indebted to @HannahTizard on Twitter for this lovely infographic about tall poppies.
image

Tall poppies may experience meanness from others because they are full of ideas and are not afraid to challenge the status quo. They are always thinking about how to do things better and are not prepared to accept mediocrity, especially when it harms others.

I will be using this lovely infographic today to encourage the people at the event, who I think of already as tall poppies, and giving them a link to this blog so they have a reference to keep.

I hope you find it helpful too. Please be a tall poppy; challenge the status quo if you think the care you provide or commission isn’t what you think you would want yourself when you are 94 or even older.  And do something right now to start making things better for every elderly person who wants fewer tubes up their bottom and down their throat, and more time to enjoy their latter days with somebody kind to sit with them, help them to have a drink and hold their hand.

Meanwhile, as I intend to live until at least 94, I’m off to read Sod 70! by the indomitable Dr Muir Gray, to help me continue to treat my body hard but well, and How to Age by Anne Karpf, from the School of Life series, to help me manage my (sometimes fragile) psyche and approach old age with equanimity and joy.

Do please join me.

Post script: 11 hours after posting this, I’ve already had lots of feedback. One person feels I’m generalising and that the research quoted doesn’t support my view that older people would prefer to avoid unnecessary investigations. I agree that we must ask people and really listen carefully to their answer before subjecting them to invasive tests. Over 100 seem to like it so far.

I’ve also realised that I’ve been channelling the #HulloOurAimIs campaign from NHS Change Day led by my lovely Twitter and real life chum Alex Silverstein @AlexYLDiabetes. So I wanted to mention it. Alex is the tallest of poppies and despite being less than half my age, has taught me loads. Go Alex and thank you xxx

 

 

Dear New Secretary of State for Health

Congratulations on helping to form a rainbow coalition government so quickly, and for your appointment. It is wonderful that a Conservative/Green/LibDem/Labour/National Health Action (delete as appropriate) MP is prepared to set aside political differences and take responsibility for the NHS in England on behalf of us all. What could be more important?

I expect you will get a few suggestions on what to do first. I thought I’d make it easy and send you my list at the earliest opportunity. It contains 5 things.

  1. Pass an Act of Parliament that makes it illegal for any politician to use the NHS as a political football. This will allow you to make plans with all the coalition partners that transcend the short – sightedness of a 5 year parliamentary term. And if it puts the Daily Mail out of business, it will be have the added benefit of improving the nation’s mental well-being.
  2. Appoint a group of well-informed independent thinkers to form your ministerial team. A few suggestions: Dr Sarah Wollaston, Norman Lamb, Dr Caroline Lucas, Liz Kendall, Dr Clive Peedell. They will help you remember the difference between the role of elected members – to set overall strategy and oversee governance – and of professional clinicians and managers, whose job it is to advise on how best to achieve your aims safely and then deliver them for you. Don’t be tempted to get  involved in professional matters such as numbers of hospitals and staff, or specific clinical policies. The most important job for you and your team is the give the experts room to work and keep politics with a big P out of it while they do.
  3. When fighting for the money needed from the Treasury to stabilise and transform the NHS and meet health needs today and for generations to come, think what Nye Bevan would have done if he had been told it couldn’t be afforded. Then do that.
  4. Do what you must to sort out the mess that means that 7 people now do the job of one civil servant who used to run the NHS, and ties the hands of politicians like yourself in bureaucratic loops. Remove the tyranny of competition for competition’s sake. But don’t do a wholesale reorganisation. It is the way we provide NHS services that needs to change, not arcane aspects of structure.
  5. Dump the phrase “parity of esteem”. It has lost all credibility. Instead, allocate funding on the basis of disease burden and the cost of not offering treatment based on the best evidence at the earliest opportunity. This way, children and young people’s mental health services will jump from the bottom of the priority pile to the top, with mental health services for adults of all ages coming a close second. If anyone complains, point out these three facts:
  • Psychosis is like cancer. The earlier it is diagnosed and treated, the better the prognosis and the least likely it is to recur. The same is true for all serious mental illnesses.
  • 75% of mental illnesses start before the age of 18. Like my depression
  • People with serious mental illness die on average 20 years earlier than the rest of the population. From suicide, yes, but more frequently from heart disease, strokes, cancer and the complications of Type 2 diabetes. Putting mental illness first will save money and lives, and make those lives worth living.

The results of the 2015 election show that the public are fed up with media-savvy politicians who speak in sound-bites and put their own interests and those of their well-connected friends before the needs of ordinary people. But it will take us a while to relearn that honourable politicians sometimes make mistakes, that most mistakes only come to light with the benefit of hindsight, and that even the best decisions don’t invariably deliver the expected results. Being a public servant has never been harder. Please take care of yourself; we need you to remain compassionate, committed and to keep telling it to us like it is.

With loving kindness,

Lisa

 

 

Pride and Prejudice: post NHS Change Day ponderings
20.30 from Birmingham New Street to London Euston

20.10 Birmingham New Street to London Euston

You know how it is. There’s been a big event in your life – a special birthday or a wedding. Even NHS Change Day.

Now the party’s over. Everyone’s gone home, you’ve done the clearing up and read the thank you texts. You’ve got a hangover and sore feet from dancing till dawn. And you feel a bit flat. And you wonder what the point of all that fuss was.

I was feeling a bit like that the day after NHS Change Day. Maybe you were too? I’d given my all to various events in Birmingham. I was made extremely welcome by amazing people at Birmingham Children’s Hospital, at Birmingham Community Trust, at two children and young people’s mental health services and by patients, users, carers and staff at a West Midlands Health and Care Voices event in the evening.

It felt very special to share thoughts with patients and staff about things we all care very much about. Everyone seemed up for playing their part in changes that needed to happen. And our NHS Change Day: Time To Change campaign also seemed to hit the mark for many of the folk I came across.

A student nurse called Ellie did something on NHS Change Day that I didn’t have the courage to do until I was 58. In this blog, she beautifully describes what happened to her in front of 40 other people. In our Time to Change video, I ponder what may have made me take so long.

So that’s the pride part. I felt proud of my small contribution to NHS Change Day.

And the prejudice? It was to realise that some of the naysayers also had a point. While NHS Change Day 2015 has been amazing, people who have never heard of it continue to do stunning stuff. Like my friend Alison, a sister in a hospice, who with her colleagues care for dying people with such skill and compassion, I defy anyone not be able to learn something from how they work. Their hospice is one of the most joyous and hopeful places I have ever been invited to visit.

Or another friend, a clinical leader in an acute hospital, battling to get colleagues to see people with dementia for what they really are, human beings with wants and needs, rather than “inappropriate admissions” or “delayed discharges”. Or a third friend, a health visitor with a caseload so huge, and with clients with so many complex health and social problems, I cannot imagine how she is coping. But she is, as are so many others like her.

On Friday, my mother and I went to visit my auntie, her only sister, in her care home. Most of the staff who work there earn not much more than the minimum wage. As always, we were moved by the tenderness shown towards those living at the home. These staff truly love the frail and confused people whose care has been entrusted to them.

People like this don’t need a special day. What they do every day is extraordinary.

The NHS has to change. We cannot go on as we are. It’s an honour still to be involved, as a helper now rather than a leader, and to play a small part in bringing some of those changes about. NHS Change Day is an enabler. But it is no more than that.

Life, and death, continue 24/7 across all parts of the NHS and the services that support it.

If you work in the NHS, I hope you had a wonderful NHS Change Day. Thank you for what you do every day. I am most humbly grateful.