Our NHS Learning Disability Success Story

Toby had the dentists on Wednesday, and it was a bit of a daunting appointment. I’ll explain why in a little while.

Toby sees an NHS specialist community dentist who works with adults with a learning disability. Dental appointments with Toby are generally great fun, but not very successful. The dental team are wonderful, and they make both Toby and I feel like we’re visiting old and very trusted friends. Of all the squillions of NHS appointments that we’ve clocked up over the years, seeing his dentist has to be the least stressful and the most enjoyable.

However, Toby doesn’t really make it easy for them. He loves greeting each of them, he loves sitting in the chair, he particularly adores it when they make the chair move up and down and back and forth. His favourite moment is always if he’s able to outwit them and take control of the chair moving buttons himself, and he then does his best to morph the dental chair into a white-knuckle ride experience.

However, the bit he’s not very good at is keeping his mouth open for long enough for the dentist to properly examine all his teeth. He’ll allow them to look at his top front teeth but he can fold his lip over his bottom teeth incredibly effectively, in exactly the same way he does when it’s teeth cleaning time.

It’s hardly surprising really. Toby is profoundly disabled, and he has the cognitive functioning level of a neuro-typical two year old. He is non-verbal, he has severe autism and he also has extreme oral sensitivity issues. He was tube fed completely until he was a teenager, and so he finds it almost impossible to tolerate anything in his mouth, nor does he have the comprehension to understand why co-operating with the dentist is a good idea.

The dental team he sees are superb though. Not just with Toby, but with Malcolm and I as well. They include us every step of the way and allow us to take the lead in trying to get Toby to comply as best he can. They ask for our help and then welcome it, they let us both do whatever it takes to keep Toby relaxed and happy throughout the appointment whether that means singing his favourite songs, letting him watch Mr Tumble on his ipad, or playing hide and seek around the room to make him laugh. They let us show them how to best encourage Toby to open his mouth, even for a few seconds, and they let us stay and hold his hand all the way through the examination. They just “get it”. They understand that people with learning disabilities or autism or both can perceive everything just that little bit differently. They know that trying to reason with Toby, or getting stern and officious, will simply not work. Most of all, they grasp that the only reason we are all there and working so hard together is because of Toby, and they ensure that throughout the whole time Toby is the most important person in the room, and that keeping him relaxed, happy and engaged is going to be the best way to have even the slightest chance of examining his teeth properly.

On Wednesday, though, things were going to be different. His community dentists are under the umbrella of King’s College Dental Institute, and there is a brand new service available whereby an external dental team visit Toby’s community dentist premises, and are able to carry out a full dental examination while Toby is under sedation.

Of course it was daunting. Toby has a very traumatic medical history stretching right back to when he was born. Most of his first six years were spent in hospital, and it was never expected he’d ever survive more than a few more weeks. None of us dared hope that we’d ever have him long enough to celebrate his 22nd birthday, which we did earlier this year.

Although his health is no longer as volatile as it once was and he’s stronger than anyone could ever have once dreamt of, he is more vulnerable to side effects of things like sedation than most people. We also didn’t know how he would react – cannulating Toby is never easy, and now that he’s bigger and stronger and able to resist much more, we weren’t even sure if they’d be able to manage to sedate him. Of course we also knew that we would be meeting a new team, people we didn’t know and who didn’t know Toby. I had my doubts as to whether they would be anywhere near as good with Toby as his long-established mega-wonderful dental team would be. Another concern was that Toby now lives in a care home which can make my role as his no-longer-full-time-carer an awkward one, particularly with a new team who don’t know Toby.

We arrived just after Toby and two of his wonderful care team pulled up in their car. Toby was thrilled to see Malcolm and I. Within seconds he had pick-pocketed Malcolm’s iphone, and had navigated his way to YouTube and all the Mr Tumble clips.  Our young man might not be able to make much sense of dental appointments but he sure is a whizz on technology. One day he’s bound to hack his way into the Pentagon just to see if there are any hidden Mr Tumble episodes lurking there too.

The appointment went wonderfully well. Two of the three staff members had never met Toby before, but that didn’t matter because they understood how essential it is to make him feel important. They asked me questions, they involved all of us in Toby’s care, and they made him feel welcome, happy and valued. They listened to any of our suggestions and then they followed them. Everything was about Toby and making it work well for him. They even chose to start the sedation process with nasal Midazolam, to cut down any distress caused by vein hunting with needles. Toby sat on the dental chair like the King of the Room, blowing kisses to the staff and I honestly think he thought we were having a party.

It left me thinking why every NHS appointment with Toby can’t be as easy and as manageable. Why isn’t there a designated and highly trained team of learning disability specialists available for blood tests or X-rays or A & E admissions? Why can’t every NHS team understand the importance of including the family and carers in every care-based decision regarding people with learning disabilities? Of course I’m not an expert in dental surgery, but the dental team recognise that I’m an expert in how to help Toby cope best of all. Why can’t every NHS appointment for Toby be long enough to work at gaining his trust and getting the best possible level of co-operation from him? Of course these things cost money, but we have a current situation within the NHS whereby the CIPOLD report of 2013 found that three adults with a learning disability are dying prematurely on hospital wards every single day in the UK, simply because our mainstream NHS services don’t really cater for people like Toby at all.

So, four simple steps could make all the difference – 

1. Involve the families and carers in all learning disability care
2. Actively invite and listen to suggestions and ideas from them, and then follow their lead
3. Factor in extra time at every appointment
4. Ensure all staff have the patience, kindness, understanding and training to work with anyone with a learning disability. If it will help, I’ll even come and run a workshop with your staff on exactly these issues.

The whole of the service that the NHS Community Dental Team provide has been designed completely around people like Toby. From the moment we arrive to the moment we leave, Toby’s needs, both physical and emotional, are carefully considered and addressed. Not just addressed though, completely surpassed by the kindness, the interaction and the ability to go that extra mile that the staff have.

Only twice before in Toby’s life has he been able to have a proper full-blown dental examination, each time requiring a day surgery admission to an unfamiliar environment within a hospital. This new service where Kings send people to the building that Toby knows, loves and feels at home in made all the difference in the world. The best thing of all is that this will now happen every six months.

For young people like Toby this is hugely significant. Toby can’t talk so he has no way of telling us if he had toothache. He could be in excruciating pain and although his behaviour might indicate that he was in some way unwell, it would take us days, weeks or even longer to ascertain that it was tooth related. Even once we had worked it out, he wouldn’t co-operate with a full dental examination, and it would take a lot of further planning and preparation to admit him to hospital for dental work under anaesthetic. Now, for the first time in his life, I have the reassurance of knowing that every six months minor problems will almost certainly be picked up before they escalate into full-scale extremely painful toothache.

Well done The NHS. Well done Kings Dental, and particularly well done and thank you to each of the lovely team who worked to make it happen for him on Wednesday.

Toby went back to where he lives with his two of his fabulous care home team, and Malcolm and I popped in a little bit later to see how he was.

 On the way home from the dentists in the car Toby had tried everything he could to scratch away and pull off the tiny mark where the cannula had been – he does this with any cut, mark or graze and often makes it much worse, sometimes until it is an open, bleeding and much larger wound. When I walked into the house I immediately noticed three very bright red marks on the back of his other hand that definitely hadn’t been there earlier, and to be honest looked like a pretty serious burn.  I asked Toby’s favourite team-member how it had happened on the way home, and he could barely answer me for laughing. He had put them there himself with a bright pink felt tip pen the minute they got home to distract Toby from the real cannula mark. And it worked! Toby had forgotten the cannula mark completely, but was working really hard to try and get the felt tip marks off.

Sheer genius.

I hope you liked the pictures – I’ve shamelessly used this post to showcase some of the best photos of Toby at his recent Orchard Hill College Graduation and at the birthday party his care home organised for him – in addition to the one we had at home for him. The one of Toby, Malcolm and me sitting together at the table is Toby’s dastardly attempt to reach over to pick pocket Malcolm’s iPhone. 

If you also have a child or young adult who has a learning disability or autism which makes dental care more challenging, here’s a link you may find helpful.  It’s written by my good friend, Hayley Goleniowska, who writes the award-winning blog Downside Up, and in it she gets the best tips going from Craig Bell, who is a Learning Disability Nurse who has done extensive research into exactly these difficulties. 

Are you on Facebook? If so, have you seen The Special Parent’s Handbook Page? It’s full of the best information, advice and support for families of special needs children.

To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below