Search the hub

Easy read guides and advice on Coronavirus: Mencap – Information about coronavirus Down’s Syndrome Association – Coronavirus. What is it? How to stay safe? Inclusion International – COVID 19: Our members resources and processes Inclusion North- Easy read information guide about coronavirus BBC – Coronavirus information: What should I do? (Infographics) Easy read posters Photosymbols set of easy read posters about coronavirus (UK) including: Poster 1 - How to stay safe Poster 2 - Health issues Poster 3 - What if you get ill? Poster 4 - Staying at home Poster 5 - Please don't spread it Poster 6 - You must stay at home

This study highlights that people with complex concerns with a history of placement breakdowns and past institutionalisation can be settled successfully and safely in local communities. However, it is difficult for many of them to achieve a satisfactory quality of life long term. The obligation for this lies with service providers to provide adequate support to overcome that difficulty.

Small differences can lead to big changes which can escalate if carried out by many people on numerous occasions. Big changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family. Blair et al identified the following simple steps: Take time to be with the person and their families to understand their lived experiences. Pick up not only on what is said, but also what is not said, and avoid hurrying the interaction. It is essential to remember that every interaction counts and each contact matters. Health professionals only spend a fraction of time with a person, so it is vital to gain as much insight as possible from the person and those who know them best, and to consider all that is being relayed, verbally and non-verbally. In doing so, healthcare practitioners can refocus how they interpret what they see and develop their understanding that what is seen superficially is not all that there is.

It's midnight on the acute floor, just before Christmas. As I walk through the Emergency Department (ED), I can hear the ambulances reverse up to the door, people shouting, doors opening and closing, phones ringing and the general white noise of the department. You wouldn’t know it was night-time at all, the lights are beaming and it's as noisy now as it is in the day. I am a junior doctor. I’m on my fourth night shift of six. I have a patient on the acute medical admission unit that I need to check up on. I take the opportunity to seek some darkness and quiet away from the hustle and bustle of the ED. As I go into the unit, I spot a young man in his 20s. He has a carer at his bedside. I stop. I say "hi"’ to the carer and just take a quick glance at the saturation probe that is on the young man’s finger. It’s reading 94% (normal is >95%). "Is that number of 94% normal for Eddie*?" I ask the carer. "Yes" he confirms. "What about the heart rate, that’s reading 140?" I asked, but didn’t want to come across alarmed, as this is quite high. "No. It usually reads 90. I was worried, but assumed you were dealing with it". My time is limited, I should be checking on my patient I originally came in to see. I have now seen a vulnerable adult with an abnormally high heart rate. However, the nurses are here… they can act on it , can’t they? I need to see my patient. I have patients backing up in ED, what about the four-hour target? Those thoughts go through my head in a split second. I now find myself pulling up a chair alongside Eddie and his carer. I find out that he has been admitted as his feeding tube had fallen out; he is here to have it replaced in the morning in theatre. I find out that it had fallen out 18 hours ago. As Eddie is unable to swallow without the risk of choking, he relies on the tube for all his medication and fluids. I take a look at the observations. Respiratory rate 18, heart rate 140, blood pressure 89/48, aprexial, not confused. He has a NEWS2 Score of 6. I see a sepsis screening tool that has been completed. It has been deemed that Eddie has a high suspicion of sepsis. But... he’s only come in for a tube change? I use the expertise of the carer. I find out that Eddie hasn’t had any fluids all day and his pads have been dry. At this point he should have had 3 litres of fluid via his tube. He also has not had his medication for his seizures. This is vitally important as it is highly likely he will seize this admission. I put some fluids up. I need to be quite aggressive with replacing his fluids as he may go into acute kidney injury. I write up his epilepsy medication, this time via his cannular. I explain to the nurses to give hourly observations and to call me if there are any problems. I check on Eddie that morning. He’s bright as a button. Smiling and ready for his tube replacement. If I walked on by, what might have happened? Eddie would continue to be treated for sepsis when he wasn’t septic and received antibiotics he didn’t need. Eddie would become more dehydrated and possibly acquired an acute kidney injury. Eddie may have suffered a seizure that could have been prevented. Due to these complications, Eddie may not have been fit for his tube replacement. Eddie's length of stay may have been increased, therefore increasing his risk of contracting a hospital acquired infection. What stopped me from walking by? Eddie reminded me of my brother, *Sam. My brother has cerebral palsy and needs 24-hour care. He’s funny, he can wrap mum around his little finger, he can play pranks on you, he is still my annoying little brother but coming into hospital always poses such a huge stress on us as a family, not to mention Sam. He always has people around him that know him. So, coming into this environment is alien. Due to his physical problems, he doesn’t ‘fit the normal patient mould'. Will he get the right treatment? Will he get his medication on time? Will there be anywhere for the carer to stay? Will the nurses know how to re-position Sam? How will they communicate to Sam? Will they read his patient passport? Will they act on his patient passport? Or will they walk on by? *Names in this blog have been changed for confidentiality purposes.

It can be easy to make assumptions about a person’s quality of life, which can colour our judgements about the support, care and treatment of individuals, and how and what they should receive. So it is vital that the person and those who know them best are involved in their care, so that a more complete picture of an individual’s life can emerge and their needs, likes and dislikes can be shared with those providing care and support. This should improve the quality of the care and treatment that a person receives. It was with this in mind that the hospital passport was developed, containing important information about the person, such as their health and health difficulties, likes and dislikes, and any medication that they may be on. The idea was adapted from one created by Gloucestershire NHS primary care trust and introduced at St George’s Hospital in south west London. It was created by people with learning disabilities and health professionals from Wandsworth and Merton community learning disability teams and the acute hospital to ensure a better experience and health outcome for people with learning disabilities and their families in St George’s.

This short video, by Abertawe Bro Morgannwg University Health Board, demonstrates the Soothing Patient Anxiety (SPA), a unique approach to co-production in meeting the needs of complex patients requiring a surgical intervention.

The Act did two key things: Put a duty on the Government to produce and regularly review an autism strategy to meet the needs of autistic adults in England. The first ever strategy for autistic people in England, Fulfilling and rewarding lives, was published in 2010 with a commitment to review this strategy three years later. The new strategy, Think Autism, was published in April 2014. Put a duty on the Government to produce statutory guidance for local authorities to implement the strategy locally.

This webpage includes: an easy read leaflet about STOMP video challenging behaviour resources online medication pathway for family carers resources for healthcare professionals.

This is an easy-read leaflet that you can download and print to give to your patients, service users, families and carers to inform them about STOMP.