Encouraging children to get active, eat pizza and stay safe

Last weekend was spent with two sets of my grandchildren. I really enjoyed both visits. On the Saturday we had great fun making pizzas in my daughter’s new outdoor pizza oven. There is nothing quite like a freshly baked pizza, with a glass of wine, great company and sunshine, even if it means playing endless games of I-Spy. On the Sunday I was playing host to two more grandchildren. We went to the local park, which has an enormous children’s play area. Here the two boys played at showing just how little fear they have when it comes to climbing, swinging, running and sliding. Then it was on to the train ride for an enormous ice cream, before getting to the ‘rock’ concert. The boys, complete with blow up guitars alternated between playing along with the bands or racing around the stage on their scooters. 

What I had forgotten in my enthusiasm for having both sets of grandchildren over on the same weekend was just how much energy they have at that young age. I’m sure they were tired, but by the end of the weekend I was exhausted! Now I walk every day, usually 10 - 15km a day, but these little ones ran rings around me when it comes to being physically active. They never stopped.

As I lay in my post weekend Monday morning bed, I tweeted something about ‘getting up and getting going’ a message illustrated with a chicken atop of a spring. However, the reality was I was really feeling my age. I usually spend the first hour of each day playing catch up with my reading. Laying there feeling sorry for myself, the first story I came across was a report on whether parents know how much exercise their child needs to stay healthy. Apparently, a staggering two thirds of them don’t. The ‘official’ guidance from the NHS suggests that children aged 5 – 18 should do at least an hour of exercise every day, but 68% of UK adults didn’t know this or thought the target was lower (on average about 45 mins). 

In England, it’s reported that around 3 million children lead active lives. That’s under half the number of the child population. However, it’s a much smaller proportion of these children that actually achieve the recommended daily activity target. The data was collected from a survey conducted by YouGov on behalf of the Youth Sport Trust (YST). Their survey also showed that there was a decline in the time being given to children and young people’s physical education and physical activity. Data from Sport England showed that only 17.5% of children are achieving the 60-minute daily target. There was also a significant difference in the amount of exercise being undertaken depending on the child’s economic background. Nearly 40% of children and young people from the poorest families were doing less than 30 minutes of exercise a day compared with some 26% of children from middle class families.  

Last week schools across England were celebrating YST National School Sport Week, aimed at promoting the importance of regular exercise and the health and well being benefits it brings. One of the champions promoting the event was the remarkable Ben Smith. Way back in 2015/16 Ben ran 401 marathons in 401 days. In total he ran an incredible 10,506 miles, which if you want some perspective, it's the equivalent of running from London to Sydney! His run was to raise awareness of the impact that bullying at school has on an individual’s mental health and wellbeing. His own school experience of sports was not a good one.  

I can empathise with Ben’s experience. I hated sports at school and would do anything to get out of participating. I have never followed a football team, although the continuing success of the English Lionesses has captured my imagination. As a young person, I did take up archery (and once shot my bow and arrows in front of the Queen), and took up snooker, practising in smoke-filled snooker halls. I wasn’t really any good at either of these. However, by the time I reached my thirties, I had found a sport I could excel at, it was sport rock climbing. For the next 25 years it was something that I really enjoyed, although I never conquered Malham Cove. Sadly, creeping arthritis in my hands put paid to me continuing this sport into my 60s. The one thing I hated at school Physical Education (PE) lessons was swimming. The junior school I went to didn’t have its own swimming pool and once a week we were marched down to the local open-air municipal pool and given swimming lessons. We had to keep doing it until we passed our ‘Confidence Test’. I eventually passed mine by keeping at least one foot in contact with the bottom. I have hated water ever since. These days I only swim in pools where I can put my foot down and touch the bottom. Even today, I wouldn’t swim in the sea unless the same was true. 

Since 1994, swimming and water safety has been a statutory part of the UK national curriculum for PE. All children need to understand how to stay safe in and around water, and wherever possible, know how to swim. Unfortunately, only half of all primary schools in England provide the latter part of this curriculum (knowing how to swim). Unlike me, my grandchildren are confident swimmers, and know all there is to know about the Royal National Lifeboat Institution (RNLI), an organisation that not only rescues those in peril at sea, but does so much in primary schools in terms of teaching water safety. However, and tragically, as I write this blog, one 12-year-old girl and two young men have died as a consequence of swimming in open water during the hot weather. Let’s encourage our children and young people to both become more active, eat lots of outdoor pizzas, and above all else, stay safe. 

Learning Disability Awareness and the day Blue Peter came to visit

If you happen to be in the market for a rather special apartment, you could try taking a look at this one in Wyfold Court. It’s on the market for offers around £1,800,000. However, be warned, its architecture was once described as ‘Nightmare Abbey’. Although Wyfold Court is now a prestigious collection of 11 luxury apartments, it was once the notorious Borocourt Hospital. For those readers under the age of 45, the name Borocourt Hospital is unlikely to mean anything. Some 38 years ago it was one of two hospitals that featured in the (still) shocking TV documentary, ‘SilentMinority’. The film was made by Nigel Evans, a lifetime campaigner for people with disabilities. The other hospital featured was St Lawrence’s Hospital in Caterham. 

Both these hospitals provided ‘care’ to 1000s of people living with a learning disability and/or a mental illness. The documentary highlighted the dreadful nature of these services, the abuse, neglect and ignorance by those meant to be providing the care. The film was made in 1981, which also happened to be the United Nations’ Year of Disabled Persons (IYDP). In many ways we have moved forward in our thinking; in other ways we haven’t. For example, IYDP aimed to ensure that there was an international action plan that promoted the equalisation of opportunity, rehabilitation, and the prevention of disabilities. Its slogan was ‘a wheelchair in every home’ – I think this rather quirky slogan kind of misses the point, but the well-intentioned approach was one where people living with disabilities have the right to take part fully in the life and development of their societies.

By 2006 a more sophisticated approach had been developed, and the UN Convention on the Rights of Personswith Disabilities was adopted – in the UK this was ratified in 2009. This Convention is a great deal more inclusive in its scope and the language used is considerably more appropriate. Given there are one in seven people in the world who have some form of disability (that’s over a billion people), a 100 million of whom are children, you would have thought the adoption of the Convention would mean that all should be OK in the garden. By now we should have learnt from the lessons of history and should be moving the equality agenda forward at pace. Well think again! 

Over the past couple of months in the UK, we have once more seen reports (from the Care Quality Commission and from the Children’s Commissioner) that tell of an increasing number of children with learning disabilities being admitted unnecessarily into hospital, and often hospitals that are far away from their home. The reports showed not only were these children stuck in hospital for long periods, (average time being six months) but the use of seclusion was wide spread. One in seven children had spent at least a year in hospital. This extended stay could have been avoided if there were appropriate levels of community-based support available. Last May, the BBC’s Panorama programme revealed yet again the physical and psychological abuse of people with learning disabilities at Whorlton Hall, an NHS funded but privately-run hospital. This programme came just eight years after a similar programme showing the neglect and abuse of patients at Winterbourne View. Six ‘care workers’ were given prison sentences for their part in the cruelty, and the police have arrested 10 workers from Whorlton Hall. 

Today marks the end of Learning Disability Week 2019. This is a week of awareness raising. Now I read many things over the course of a week and seek information from many different sources. I think, when it comes to health and care matters, I’m usually pretty well informed. I am slightly ashamed to say that I hadn’t recognised the significance of the date until one of my Twitter friends (thank you @kwelsh1) gave a shout out last Monday. Katy reminded folk that it was Learning Disability Week and posed the question: ‘what will you do to raise awareness?’, and I must admit that felt like a difficult question to answer. After some thought I decided I would use social media this week (and beyond) to help raise awareness (partly the reason for this week’s blog). 

The week also marks 100 years of Learning Disabilities Nursing. And on social media there was a great deal of discussion about the changes that have occurred over this time. At my University (University of Salford) the celebrations and events continued throughout the week. The School of Health and Society have a run a BSc Learning Disabilities Nursing and Social Work programme for some 25 years. This programme allows those that complete the course to register both as a Nurse and as a Social Worker. Places on the programme are much sought after. I have long believed that every nurse should have experience and knowledge of working with children, adults, people with mental health needs and learning disabilities. However, this is not the same as advocating for the creation of the so-called ‘generic nurse’ found in other parts of the world. 

Learning Disability Nurses like all nurses have the skills, attitudes and abilities to ensure a truly person-centred approach is adopted, so that individuals can achieve the best physical, mental and social health and wellbeing that they can. In so doing, people will be better able to fulfil their potential in all aspects of their lives. Despite its shortcomings, St Lawrence’s Hospital had one such example of how to fulfil one’s potential whatever the odds. 

Joey Deacon was born in 1920. He was born with severe cerebral palsy, which extremely restricted his mobility. His speech was almost unintelligible to most people except his closest friends. He was admitted to the hospital aged eight years old and spent his entire life there. In 1970 he started to write his autobiography. It took 14 months to write the 44-page booklet. In 1974 Radio 4’s Women’s Hour ran a feature on Joey’s story. This led to a documentary made by the Horizon programme. In 1981 Joey was featured by the BBC’s Blue Peter programme as part of the United Nations IYDP. They came to St Lawrence’s to make the programme. It was the same year that the ‘Silent Minority’ was made. In December of that year Joey died. However, whilst the Blue Peter programme didn’t quite have the desired effect (people laughed at his struggle to communicate and he became associated with pejorative name calling – ‘you’re a Joey’) his legacy of how to fulfil your potential lives on. And unlike me, Joey really did know how to raise people’s awareness of learning disabilities.    

Close Encounters of the Dying Kind

It was Scarlett O’Hara, in Gone with the Wind, who said ‘Death, taxes and childbirth! There’s never a convenient time for any of them’. And death, dying and staying alive all featured in my thoughts last week. I think it was just one of those weeks. It started when I read of Emily Pringle, who was involved in a car accident and ruptured an artery in her neck. She was making a national awareness-raising appeal for more male blood donors to come forward. I didn’t realise, but twice as many women as men donate blood, and the number of male donations has fallen by nearly a third since 2014. What I also didn’t understand fully was that male blood is often more suitable for creating blood products such a plasma and platelets, and that men typically have higher iron levels than women. 

My second encounter was the reporting of two people who had died recently. The first was the remarkable Grace Jones (nicknamed Amazing Grace), who was Britain’s oldest person. Her death was confirmed last week after reaching the fabulous age of 112. She was reportedly fit and active right up the point of her death. The second report was of the death of Leonard Bailey, who died aged 76. He was a transplant surgeon, who became famous (or infamous depending on your view) for transplanting the heart of a baboon into a child dying of congenital hypoplastic left heart syndrome. Back in 1984, when he performed the baboon transplant operation, this condition was nearly always fatal. These days, although still a critical condition, much more can be done to help those born with this condition. Sadly, the patient who received the baboon heart only survived for a further 21 days. Dr Bailey performed the first successful heart transplant in a child the next year and went on to perform 375 more over his career as a doctor.  

Last week, like love, death felt as if it was all around us. And it probably was. Globally it’s estimated that 55 million people die each year, which is less than half the number of births. When this number is broken down, it reveals a staggering set of statistics: 151,600 people die each day, that’s 6,316 people each hour, or 105 people each minute, with nearly two people dying each second (1.80). In that very same second, there will also have been four births.

Where and when people die was something we considered at our monthly Quality and Safety Committee. Each month we look at our mortality data. There are two measures that we and all other NHS Trusts use: Summary Hospital-level Mortality Indicator (SHMI) and the Hospital Standardised Mortality Ratio (HSMR). Both of these measures look at the actual number of deaths of patients following hospitalisation and the number that would be expected to die based on average national mortality figures. SHMI data also includes those patients who die within 30 days of being discharged from hospital.  In England during 2018, there were some 9.2 million discharges from which 293,000 deaths were recorded either whilst the patient was in hospital or within 30 days of their discharge. 

While the actual number of deaths in hospital has steadily fallen in our Trust, 48% of all people who die in the borough, do so in hospital. This figure reflects the national average (of 46.9%) of all deaths occurring in hospital. However, in looking at the data, we found that the Trust has a higher proportion of deaths at the weekend of people who have very short admission (0-2 days) than the national average. The Trust operates a seven-day service, with access to the expertise and experience of the doctors and nurses being constant. Any lack of availability of expertise wouldn’t account for this statistic. So, the question we asked ourselves, was whether these patients were being sent into hospital to die?

There were certainly a significantly high number of weekend deaths for patients who were aged 75 and above, and whilst many had been admitted from their own home, there were a lot of patients who had been brought in from care homes. Work is going on to explore any variation in the level of community and primary care services during the weekend to ensure those patients requiring end of life care can have this provided at home. However, discussions with families has revealed that although most wanted their loved one to die at home, many were frightened at the prospect or didn’t live close enough to be with and support their loved one in their last few days and hours of their life. Thankfully, for many people they will only experience the death of another infrequently. For doctors and nurses, this is not the case. Death is part of the professional world they inhabit. I’m sure many nurse readers of this blog will have had to make that phone call to relatives advising them to come to the hospital as soon as possible. Death and dying are not easy subjects to talk about and I think all those involved in palliative and end of life care are truly special people.

I would like to end this posting on a lighter note. Last week I was an examiner in a PhD viva. The student’s work looked at the impact of acculturation (assimilation into the host country’s culture) on the mental health of refugees coming to live in the UK. It was an enjoyable viva and the student did very well in defending her thesis. It was even better to hear how her participants who had come to live in the UK, had gone on to build lives that showed their resilience, courage and humour. To quote the classic ‘Simple Minds’ song, they were truly alive and kicking!