The business of delivering specialist services

Meet Dan, he’s the Business Manager for our specialist services which are healthcare services for specialist communities (such as prisoners, detainees in custody, the homeless and asylum seekers), or specialist conditions (such as dental, podiatry, MSK, healthy living, mental health).

Dan has shared with us what his role as a business manager entails…

Dan collecting an award at the
LCH Achievement Awards in 2014.

Tell us, what does your job involve?

I am a key link for our services with commissioners. I ensure we have fair contracts that are value for money, that are well specified and that have effective and realistic performance measures. I help services compete for new business or compete to retain their existing business when it goes out to tender. I manage the innovation and business change functions so that services are supported to innovate, improve and embed any changes.

What attracted you to this role?

I've always worked in healthcare and had got into quite strategic roles which felt detached from services and real people. I saw this role advertised and had worked with York Street Practice in a past life and had enjoyed it so I thought I would give it a go. It's a very busy and challenging role, I've never worked so hard in my life! However, it is extremely rewarding as I can see how I am impacting on healthcare for real people despite not being a clinician myself.

What is the best bit about doing your job?

No day is the same. I get to go all over the city, meeting all sorts of people. I'm often working with services that have problems but this doesn't get me down as I feel that I am helping them overcome issues or barriers.

Do you have a particular highlight from your career to date?

I think it was when we won the very first NHSE 'Excellence in Public Participation' award last year. It was for a piece of work where we collaborated with homeless and asylum seeker clients at York Street Practice to improve how they access services and as part of this we won some funding so that patients could use digital technology to manage their own healthcare. When we went to collect the award for this innovation we got to take service users with us. It was extremely powerful and so rewarding to have national acclaim for what was essentially a very simple project. Also when we won the police custody bids it was so exciting - it was hard to believe that months of hard work and late nights had paid off and it made me extremely proud to work for LCH and to have been part of that team.

How has your past experience helped with your role?

I did a Communications degree back in the day so people often think it's weird I've ended up with the job that I do in the NHS. However, the key competency I need for my day to day working is communication skills and the ability to form effective relationships, so perhaps it wasn't such a waste of time after all! I also did a lot of voluntary caring roles at university which made me realise early on that I wanted a career in the NHS and not in the cut throat media industry!

If someone was thinking of joining the trust in a similar role, what advice would you give them?

Regardless of whether a role in LCH is clinical or managerial we need people who have the right values and who have good people skills - if this is you then do come and work for us. We can train people in all manner of skills and knowledge areas but we cannot train you in the values - this has to be core to you. If you have our values then get in touch!

If you would like to join our team, click here for our latest roles being advertised. 

The Heart of Nursing

Caroline is a cardiac nurse specialist and as part of her role cares for heart failure patients, monitors their symptoms and helps them to plan their long-term care. She is one of 17 community cardiac nurses providing long-term care to patients within the trust.

Heart failure patients require ongoing monitoring because their symptoms, which include shortness of breath, fluid retention and fatigue. It can vary greatly from patient to patient, and also day to day.

“Often we see patients who are really uncomfortable but because of the intervention that we do and the adjustments we make to their medication, their symptoms improve dramatically. Often, within a week or two, patients say they can breathe easier again,” she explains.

Many of these interventions are carried out in Caroline’s heart failure clinic. Caroline spends time with the patients discussing their symptoms and taking blood tests. Based on this information, she can adjust doses of medication accordingly and give lifestyle advice, which can help people to manage heart failure.

Caroline also sees patients in their own home when they are too unwell to attend the clinic. If a patient who is retaining fluid doesn’t respond to an increase in water tablets, they often find that they benefit from having it delivered intravenously via a drip. In the past, dealing with this would mean admitting the patient to hospital. A few years ago, our community cardiac team in Leeds received a grant from the British Heart Foundation’s ground breaking scheme to pilot delivery of intravenous diuretics at home. The trial was a great success, and since, the service has been able to improve the lives of many patients that have been able to receive treatment in their own homes. 

Find out more about the community cardiac service here. 

1001 Critical Days

1001 critical days 

Sue Ranger, consultant clinical psychologist, within our Infants Mental Health team was invited to help develop the  1001 Critical Days Report, which was launched recently. Here she shares details of her experience...

  

"Tim Loughton, MP and former Children’s Minister, said that tackling child mental health issues and maltreatment in the first two years of life should be no less of a priority for politicians as defending the realm.

He made the comments ahead of the launch of an Inquiry conducted by the All Party Parliamentary Groups for Conception to Age 2- first 1001 days into perinatal mental health and child maltreatment. It suggests that the cost of failing to deal with these issues is estimated to be £23 billion, half of annual defence spending of £43billion, and that poor parental / child attachment can be passed down from one generation to the next, creating a vicious cycle and damaging environment in which to grow up.

The report is the culmination of months of inquiry sessions, which took evidence from a committee panels of experts and parliamentarians, to investigate the various factors that affect the emotional and social development of children from conception to age 2. The report was launched on Wednesday 25 February at the Speaker’s House in Parliament where a number of leading academics, clinicians and policy makers in the field were in attendance.

The over-arching inquiry pulls together previous research in the area to offer two main conclusions:

One is that to deliver socially and emotionally capable children at age 2, local policies need to be based on a commitment to primary prevention. The evidence presented in the Inquiry strongly indicates that identification of need should take place before the child is harmed, not after. Therefore, inspection should look closely at primary prevention measures which would deliver this result.

The second conclusion is that, without intervention, there will be in the future, as there has been in the past, high intergenerational transmission of disadvantage, inequality, dysfunction and child maltreatment and the economic value of breaking these cycles will be enormous. In addition, the report offers nine recommendations, which it says are practical, achievable but, above all, the minimum essential if society is to tackle these issues. 

I was lucky enough to be one of those invited to contribute to the process of gathering evidence and opinion to inform the new ‘Building Great Britons’ report on the vital importance of supporting infants and their families in the period from conception to the child’s second birthday. My involvement meant attending a series of several meetings in the beautiful wood panelled meeting rooms in the Houses of Parliament over a period of five months from September 2014 to February 2015 and providing verbal and written comments on the importance of early attachment relationships and support for infants and their families in the earliest days of a child’s life.

A significant and rapidly growing body of research now exists to support the clinical evidence that tells us that an infant’s environment and experiences in utero and in the care they receive in the first months of life will dramatically influence outcomes throughout their lives. If babies have positive and loving care before and after birth from parents who are physically and emotionally healthy then they will grow healthy brains and become secure and resilient children who make good progress and do well in school and beyond. Relationships are a key part of this process and that includes the relationships that parents have with professionals and services to support them in caring for their babies and young children. Proactive and preventative services are less costly in the long term than reactive services to address established difficulties so the policy makes good economic sense too.

I was formally invited to attend the launch of the 1001 Critical Days Report on Wednesday 25 February, along with various others including our local CCG Children’s Commissioner, Jane Mischenko,  by the Rt Hon Frank Field MP and Tim Loughton MP who chaired the APPG meetings. Speakers at the launch included Mr Speaker, The Rt Hon John Bercow MP, The Rt Hon Paul Burstow MP as well as MPs Tim Loughton, Sharon Hodgson and George Hosking OBE, CEO and Research Director of the WAVE Trust. It was quite a line up! The surroundings of the state rooms at Speaker’s House at the House of Commons were equally grand and impressive. Even gaining access to the event required airport style security checks and an escort to the Speaker’s House!

The grandeur of the setting only served to emphasise the importance of the agenda and the significance of this report for me as an Infant Mental Health practitioner in Leeds. Our city is one of few in the UK to have already acknowledged the importance of the first 1001 Critical Days and to already have in place a Best Start Strategy that prioritises proactive and preventative services to support families through pregnancy and the first two years of a child’s life.  Indeed, we held an excellent conference in October 2013 on this very subject at which I was able to present a paper on the ways that Leeds is delivering services for infants and their families to promote infant well-being and outcomes.  We were lucky enough to have several brilliant national speakers on the podium at the conference including George Hosking from the WAVE Trust.

A number of services and initiatives are already in place in Leeds doing sterling work in supporting these families and the infants who are the most vulnerable of our citizens. These include Early Start teams, Family Nurse Partnership Team, Preparation for Birth and Beyond, BabySteps, and the Infant Mental Health Service, to name but a few. An ambitious programme of training and consultation to support practitioners to support families is well underway.

The ‘Building Great Britons’ report is an inspiring and exciting publication that very much endorses the Best Start Strategy in Leeds and the commitment we have made to the first 1001 Critical Days. It has been a privilege to be part of the process of making a little bit of history happen in such an important area of policy. Getting things right for infants produces positive outcomes for them and for society. Truly an investment in the future!"

Sue Ranger

Consultant Clinical Psychologist 

More information can be found at www.1001criticaldays.co.uk

What are the 'communities of practice'?

"Without leaps of imagination or dreaming, we lose the excitement of possibilities. Dreaming, after all is a form of planning." Gloria Steinem 


We live in an evolving and unfolding universe. We see change at tremendous rates. The early 20th century started with the Wright Brothers flying a plane a short distance. Before the end of that century we were not only flying to the moon but landing on it. We live in a world of paradoxes. She is dynamic and at the same time fragile The world is interconnected and yet divided. The world is technologically accelerating and yet poverty, disease and war remain. Wall Street and poor neighbourhoods exist in the same state. This is our world with all its mess, marvels and mystery. It is beautiful, frightening and engaging. And it's all interconnected in some way with ourselves. As Carl Sagan, the astronomer, said: "The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are all made of starstuff."

Our organisations and services reflect a similar paradox. We see great service, innovation and kindness on wards and in communities. Yet there are financial worries and the awful episodes that inhabit our systems and cultures. In this complicated and complex setting there is an interesting phenomena to be sensed and seen. Across the NHS and other services new movements are arising. New energies are flowing across our systems. These networks and alliances are creating new ways of seeing and doing health and care like new seeds. They are focussed on people and putting people first. They embrace digital technology, are values driven and work intuitively as well as rationally. In a wintery time for the services we love there are signs and sources of hope and renewal. They are the summoning of spring.

These new movements take many forms and shapes. One of the most promising and fresh forms are the 'Communities of Practice'. What are 'Communities of Practice'? They are many things and no one definition exhausts their mission, role and possibility. One way to see the communities is as centres. They are centres of sharing. People who both work in and use services come together to share stories, experience and practice to develop deep dialogue and learning. From these encounters and co-learning arises a new form of shared wisdom and meaning.

They are centres of energy. They are spaces where we meet to explore issues and support each other. They are a terrain where freedom, connection and respect must be central. We hope these communities will be wellsprings for all who seek kind, better and effective cultures and practice. They are centres of life. Life and work should not be competitors or opponents. Through 'Communities of Practice' we can grow as people and workers. We seek personal and corporate development through the communities. In this way we seek to model how systems and services can be and indeed should be. In this way the communities are both dream and gift.

We invite you to join these communities, alliances and networks. Explore with us and work with the communities. Together we can make a difference. If we wish to learn and grow together we have great potential within us to create, despite everything, a future that works and cares for everyone.

Visit the Co-Creation Network website for information or watch an animation about the network here. 

John Walsh. York Street Health Practice. Leeds Community Healthcare NHS Trust
Angela Green, Improvement Academy.
Jane Pightling, Yorkshire &Humber Leadership Academy
Lucy Scarisbrick, Yorkshire &Humber Leadership Academy  

Positive about Change?

'Learning is the discovery that something is possible.' 

Fritz Perls

'The problems of the world cannot possibly be solved by skeptics or cynics whose horizons are limited by the obvious realities. We need men who can dream of things that never were' 

John Keats

Dr Martin Seligman is a Professor of Psychology at the University of Pennsylvania. He is famous for his work in the field of Positive Psychology. This school of psychological thought doesn't seek to replace mainstream psychology but complement it through the study of what gives life meaning and what makes it worth living. It asks how we can extend and amplify the good that is already working in our lives and shining the light on our creative assets and seeking their growth and unfolding.

One of the authors at the beginning of his academic career attended a presentation where Dr Seligman outlined his early ideas about the need for Positive Psychology. Dr Seligman received a series of challenging questions around 'why bother with all this positive stuff?', Dr Seligman replied that he had to because he was a born pessimist. He said he needed a practice that helped him see through problems to positive options and be more optimistic about outcomes. His natural temperament would lead him to be locked in the problem. He needed a key to unlock this process and move to another place to address the issue. This echoes well the comments of Einstein and Jung that we often cannot solve problems on the same level of consciousness that generated them. We need new spaces and thinking to break the code of the problem.

This positive, more optimistic approach echoes much of what we see crossing our services and on forums like Twitter. People and networks are sharing fresh, kind and affirming ways of being and doing as the future framework for change. These new movements offer such promise, potency and energy. Yet it is not always an easy walk although a much needed one, especially if we are talking about the deep, sustainable change that so many of us see as possible and work so hard to achieve. All too often we have experienced changes in services that only touch surface structures, policies and procedures rather than going to the heart of the issues. And sometimes people propose a ‘be positive approach’ as part of these initiatives, failing to really appreciate the complexity of issues, acknowledge the scale of the challenges or engage the difficulties that the people involved deal with on a day to day basis when they see the potential of what could be possible in the face of a reality that seems intractable.

The kind of positivity Seligman is promoting has nothing to do with creating false positive-ness that can only ever skim along the surface of change. Rather, a Positive Psychology approach invites us to name the problems and the pains and see how we can learn from them to work them through in constructive and compassionate ways. Positive Psychology offers much for us to learn. It is not just about being positive, its about engaging with the complexity of a challenge and bringing positive approaches to working with it. Authentic listening, mutual support, empathy, knowing we don't have all the answers, a commitment to deep and open dialogue and the creation of new ways to think and do health and care is the DNA of these new movements. At it’s heart is the belief that all of us have tremendous goodness, gifts and potential. We believe that is from the activation of these wellsprings that the solutions and new forms of service will emerge.

- John Walsh. York Street Health Practice, Leeds Community Healthcare NHS Trust

- Dr Andrew McDowell  http://www.theperformancecoach.com

(The authors of this met recently at an initiative of the NHS Health Trusts and Public Health in Leeds. They have brought Health Coaching into the city so we can look at and change the quality of our health conversations with patients. The old model is where the patient is the passive recipient and the clinician the expert. This is a move to a new terrain where both are experts and co-create health plans and solutions together. At the heart of this approach lies a view of people as not problems but as people with assets, gifts and potency. This more humanistic and positive model offers great promise to people and the city.)

The Stress Umbrella

'Change the way you think'

After my anxiety stepped up to a new notch of feeling shaky every day and wanting to avoid going to work I knew I needed a little bit more help. I went to the GP and told her how bad I was feeling. She referred me to a service in my area run by Leeds Community Healthcare Trust. Completely free on the NHS, the service offers an indispensable six week course which focuses on the stress umbrella. This features depression, anxiety, overcoming fears, sleep, medication, coping mechanisms and more. I was a little sceptical I have to say – an avid reader with two science degrees and a lot of self help books, I wondered what this course could give me that was new information.

However I cannot praise the course enough. It is divided into different modules and each come with fantastic booklets full of advice and activities to last a life time, and useful homework to apply what you have learned to your week. Every week you complete a questionnaire on how your feeling, confidentially, and this is used to assess the improvements or changes in your mood so that you can get further help where necessary and monitor yourself. This course ended with many people hanging round at the end just to sing and shout their praises. I did not know things like this existed on the NHS, but it motivated me to take hold of life by the horns again. Not only am I feeling over the moon now, but the useful pack and CD are for life, I feel I can refer back to it whenever I need!

Here I break down the course with some of my opinions about it and try to answer your potential questions as a service user.

But when could I even attend?

Leading a very busy work and life schedule I was sceptical about when I would even be able to attend. The course organisers are understanding and exceptionally flexible. There are day-time or evening sessions. When I couldn’t attend one of my Thursday night sessions due to work, they easily swapped me on to a Wednesday session who were up to the module I was up to, and there were a variety of convenient locations in Leeds, including the Cosmopolitan hotel in the heart of the city centre and West Yorkshire Playhouse, opposite the bus station with abundant transport options. If you did miss a session there was opportunity to swap, or catch up via the course booklets. However, it is best you do attend all the sessions for your own benefit. As I said, the course was invaluable to me; it gave me a magnificent boost!

Who else was going, will I have to talk?

The course is not like going to group therapy. In fact, I’d liken it most to attending a lecture or classroom lesson. Each session is around 90 minutes to two hours and always features a brain/drink/toilet/chat break of five minutes or so in the middle. There are usually two speakers so as to engage your listening further (we all know focus is near impossible for two hours of just listening!). You can further prepare for each session with the booklets given out in advance of that session, so you can get a good over-view before you attend. But you absolutely do not have to talk at any point if you don’t want to. The shy and anxious among you, please be reassured, there are barely any verbal questions asked that aren’t rhetorical, and no one has any pressure to answer anything. What you do find however is some members start to recognise each other and even make friends through the course. You also have the opportunity at any time to talk to the speakers in private about further questions. There is absolutely nothing intimidating in turning up and you are always greeted to sign in and grab a drink and weekly questionnaire then sit wherever is most comfortable by very friendly experienced faces.

Now I have to be honest, I thought in the original state I was in, “right, I need CBT, I need one-on-one therapy, it’ll cost loads, and I’ll probably need it for the rest of my life, I’m such a mess”. And so I was sceptical about attending a ‘group session’. I realise now, one of the biggest boosts was attending a group session. For a start, it shows that actually there are so many in the same boat. In fact, I could not believe how helpful that was to me or how many people kept attending. The age range was phenomenal, a perfect cross section of age, race and gender in fact. And there were no qualms in me bringing along my partner or a friend (subject to space on the week’s course). This was most helpful in fact, when I couldn’t relax at 3 am in the morning and my boyfriend would wake up and talk me through the relaxation techniques leant like a prize yoga teacher!

I must say, my problems were quite specific, relating to a couple of things that happened to me in my work life that had made me very anxious in work. I was convinced the course would be far too generic to help. How wrong I was! And, it is a tribute ironically to that old proverb ‘your problems are no worse than anyone else’s. Because while I was thinking my problems were worse, or too specific – actually the thinking cycles involved in depression, stress and anxiety are highly generic. By breaking the way I perceived past situations and upcoming problems I have successfully overcome the pessimistic and over-paranoid thinking patterns.

Course Breakdown

As I mentioned, the course is split across six weeks, and each week also comes with a matching booklet in advance with more information and activities. I have taken here the official module descriptions outlined in the invitation letter and added footnotes about my experiences from the course:

Week One: Information about stress

You will find out what stress is and what it is not, the main signs, the vicious circles that keep it alive and how Stress Control works. We will show you a video of people talking about how stress affects them. We will give you a pack to keep future course materials in and encourage you to start to apply the learning between classes.
An introduction to the stress cycle. Here you will realise how low self esteem, depression, anxiety, panic, poor sleep, anger, addictions and phobias can all be linked and feed each other in a powerful cycle. You will learn how to assess your own personal stress cycle and where the points are you can cut it! I left this class feeling so proud of myself for taking a step myself to self-recovery and also feeling so normal surrounded by so many others. You will see the cold hard facts about how many people are suffering, as well as the full room around you. You will also realise, therefore, it is not you, and you are not stuck like this, and you will learn to remove yourself from the stress so it cannot feed itself.

Week Two: Controlling your body

We get down to tackling stress in this session. You will learn how your body signs feed stress. We look at why we get stressed and how the body reacts to it. You will learn three skills – breathing, retraining, exercise and progressive relaxation and look at caffeine. There is a relaxation CD to take away and we would like you to try to start to use this regularly.

I really enjoyed this session; we learnt not only breathing strategies but physical muscle exercises for instant relaxation. We had a go at doing them as a class and also received the invaluable relaxation CD which takes about 30 minutes to complete. The tracks from the CD are also available to download as MP3 online for those who would rather play through their phones or tablets. The strategies to controlling caffeine were very useful to me as it made me aware of my intake, I’m a bit of a coca-cola and tea addict but working out what time to drink it and how to count it is beyond helpful if your prone to sleep issues, nervousness or palpitations. 

Week Three: Controlling your thoughts

You will learn how your thinking feeds stress. We will teach you ways to ‘think your way out of stress’ – first of all by ‘building the foundation– ‘Wait a minute’. Then you will learn ‘The Big 5 Challenges’ and, finally, you will learn a way to nip stress in the bud – ‘Breaking stress up’.

This is quite possible the best feature of the course. Learning to challenge thoughts. You will learn to be able to strip back nervous and sad impulses and begin to think in a clear, logical way. This will vastly improve your ability to make effective decisions, think with a clear head, and remove “tunnel vision”. The key is not to avoid difficult thoughts, but rather to acknowledge them, and challenge them with the cold hard facts. Thus you will overcome self destruction and insecurity. This aids much more than your happiness, it aids your self-esteem and self-belief. 

Week Four: Controlling your actions

This session looks at how the way we act feeds stress. You’ll learn ways to face your fears and a great skill called ‘Problem Solving’. Also we will look at why some people, who seem to be doing all the right things, still don’t get over their stress. We will then teach you how to overcome this (‘Getting out of the Safety Zone’). These skills are really useful for building up self-confidence. You might start to see the big picture in this session – seeing how all the skills you have learned so far fit together.

Again, a great thing about this session is it actually builds on your confidence to go for things. It teaches you behaviours such as avoidance, why it happens, and how to avoid it. Realising this is natural and part of the ‘fight or flight’ response will help you to realise that you are actually well evolved to avoid things. You will realise therefore the behaviour is not strange but instead how to remove yourself from it – you can overcome these feelings. You will also learn about when you’re avoiding things without realising and thus how to combat oncoming factors. This means you can nip a bout of depression in the bud before it spirals out of control.

 Week Five: Controlling your panic, using your breathing to control stress, prevention skills and Medication

Panicky feelings are part and parcel of stress. This session teaches you ways to control them. We will teach you about using your breathing to calm your body and, hence, your mind. We will also look at some great ways to prevent stress. We will look at tablets used for stress and, if you feel these may help you, how to get the best out of them.

Some really useful information here about panic attacks, how to prevent them through both breathing and productive thinking. Various medications are discussed for anxiety and depression, as well as a review of the famous herbal remedy ‘St John’s Wart’, and you can discuss what drugs are incompatible with each other or suit your other problems best.

 Week Six: Controlling your sleep, Wellbeing and Controlling your future

Poor sleep is often a result of stress. It also keeps stress going as you don’t recharge your batteries. So, in this session, we will look at skills to help you get a good night’s sleep. Wellbeing starts the final set of skills as we look at ways of staying on top of stress.

Learning to completely re-set your sleep patterns is invaluable. I used to have every issue; bad dreams, waking at all hours, restlessness, oversleeping, messed up patterns. When I went into shift work this was even more compounded by my ongoing anxiety. The most useful tips in this session are those that teach you how to make your bed a haven for sleep and how to re-set your cycle so you can get back on track. However by this point, you may have found your problems significantly diffused! And to finish there is an overall summary of everything covered, further advice for moving forwards and a plan for further actions with the service and beyond. 

What happens after?

So what happens to you after you complete this course? Well, there is absolutely the option to re-attend any session if you need. But further to that there is the option to go on to one-to –one help if required, and you will have built up a collection of useful information, numbers and websites through the course. If your questionnaires still rate you as at any risk to yourself or your scores are still quite high for depression or your life is being affected you will be automatically rung for a further discussion.

How do I get on to this service?

This service is run by Leeds IAPT. The service is part of the national Improving Access to Psychological Therapies (IAPT) programme – see www.iapt.nhs.uk for more details.

You will need to initially give your details over the phone (number at the end of this blog). You will then be emailed your initial questionnaire. Complete this in your own time and then you ring the service and go through it with them in a bit of detail. This initial screening can take up to an hour but there is an option to visit face to face if you would prefer. This will assess if the course is suitable and fully register you to the service. You can then discuss which sessions you can attend. The service also sends you useful text messages before each session to remind you of the time and location.

Summary

An absolutely fantastic course which is perhaps deserves more promotion. I hope it will successfully undergo re-tender and grow. I wish that people were more aware this time of thing existed. When I first went to my GP I thought I was going to be fighting on my own for a very long time. The course as successfully inspired me to continue to pursue my goals of becoming a teacher, beating past bad experiences and difficulties. I know where ever I go in my life or career this course is invaluable and in fact I would teach it to my staff/ students/ pupils if I was ever in the position to do so. I think if you’ve ever been stressed, you could benefit ten-fold from this course.

References

http://www.leedscommunityhealthcare.nhs.uk/our_services_az/leeds_iapt/

Please visit the official Leeds IAPT site for more information. Or call directly to self-refer:0113 843 4388

I encourage you if you are not from Leeds to discuss with your GP for equivalent services.

Dispelling the fear of hospitals

Nicci Issac 

Many children and adults with a learning disability and autism receive poor healthcare in our hospitals. Some die prematurely of preventable illnesses. There are a number of reasons for this. One of those reasons is fear.

Fear on behalf of the person with learning disability or autism not understanding what is going to happen to them in hospital and if it’s going to hurt. This makes them not want to go to hospital.

Fear on behalf of the hospital staff about how to explain things or about how somebody with a disability might behave when they are anxious or frightened. There have been many reports such as ‘Death by Indifference’ to try and change things in our hospitals but the effect has been very limited.

The trust has developed a project with Leeds Teaching Hospitals NHS Trust and Education Leeds to try and improve this situation. This is part of the ‘Get Me Better’ campaign. We worked with one of the Specialist Inclusive Learning Centre (SILC’s) and took a group of young people with learning disability and autism and visited some of the key departments in St James Hospital and Leeds General Infirmary such as A&E and where you go if you have broken a bone. 

This project helped reduce the anxieties and fear that the young people felt. We met and spoke to lots of hospital staff who really wanted to help. This gave the hospital staff a chance to meet real people with a disability in a supportive setting so that they build their confidence in supporting people with a disability. We plan to organise this on a rolling programme involving all the SILC’s in Leeds and the inclusion units in mainstream schools.  

Nicci Issac, Professional Lead for Children's Learning Disability Nursing