A&E Learning Disability

I was supporting a young person who has is on the Autistic Spectrum to attend A&E following a head injury.

The A&E consultant was fantastic and went above and beyond to make his experience as positive as possible in what was a very scary time for him.

Not only did she work with the staff supporting him to ensure that she had all of the facts she engaged him in the process and ensured that she spoke to him as she would any other patient. She was able to pick up on communication styles used by his support staff and implement them effectively through out the time that she spoke to him.

At the end of his treatment a ‘Doctor’s note’ to say how brilliant he had been was a really nice touch and meant a lot to him. Where he had previously been very scared of hospitals and Doctors in particular he is now more comfortable if he needs to access these services.

Also the people that did the CT scan were brilliant playing ‘statues’ so that he was able to understand how still he needed to be.

This was a vast improvement on previous experiences. However I would like to suggest that at least some key staff are aware of MAKATON signs for commonly used words like ‘Doctor’, ‘Nurse’, ‘pain’, ‘safe’, ‘help’…these are very simple and can be shown in picture form. This would vastly enhance the inclusion of people who have learning disabilities in their care and make it easier to anticipate what is happening to them.


My odd life & the awesome people who have helped me!

Ever since I was 9 and a half years old I have had A. D. E. M which means acute disssemimated encephalomyelitis – it  is a viral infection that affects the brain.

I have had it 9 times and it has left me with symptoms of ADHD, Autism and Aspergers syndrome.

Dr Clements from Kings Mills Hospital is a Paediatrician who first discovered I had A. D. E. M when I was 9 and and half years old thanks to an MRI scan.

When I was 14 mum got me an appointment at CAMHS to help me with my “problems”. They didn’t prescribe me tablets until I was 15 that was thanks to Dr Vic Marimuttu and he prescribed me some Concerta XL tablets, they helped to calm me down and I have had the tablets dosage increased since then.

In May 2012 I got help from a wonderful dude Michael Woods, he is from the Mansfield HEAD2HEAD team based at CAMHS, he sees me once a week and he has done a lot to help me since we first met.

None of this would have happened without the support of my wonderful parents who are kind and caring and they put up with me!

I also wouldn’t be here if it wasn’t for a wonderful, kind and generous doctor called Dr Clements.


I feel failed by my doctors and cannot get the support I need

Since the age of ten I have suffered with depression, bullying at school and family problems contributed towards why I started to suffer with this. Growing up I never had any confidence and found life difficult. I left home in the hope that things would get better, which they did. However work life became difficult too. I then began the battle with anorexia 20 years ago and I was then given tablets that could help with both my anorexia and depression.

I started seeing a doctor at De Montfort University in Lincolnshire who was very good and helpful. I also saw a counsellor and my doctor and my councillor were very proactive in discussing my health and the steps with each other which they thought would benefit (this doesn’t happen anymore). This to me was helpful in my improvement as I felt consistency was key, even though I was being diagnosed with various illnesses.

I was then referred to a Beaconsfield House in Nottinghamshire, here the doctor and I would discuss what course of action to take and would come to an agreement. Then when I would go and see my GP he would say that my other doctor has changed their mind. This then became a very back and forth process as both doctors wanted me on CBT which I wasn’t prepared to do. I can’t believe how the service you receive from the NHS can change so dramatically within different postal code areas.

Again I have been to see my doctor today and found myself battling yet again as the medication I have is not working and all they want to do is put me on CBT. I’ve tried to ask for alternative treatments as in the past I have acupuncture which I paid for myself and this did help; however the doctors are just unwilling to entertain such ideas.

I am now at a point where I have given up on getting better; my illness is causing me to have problems within my part time work. I struggle to get out of bed; I can no longer function properly. The only way forward is to go privately which will then impact my family financially – all because the health system is failing me and I cannot get the support I need.

Not only do I have to live with my illness, I have to live with my child’s too whom has high functioning autism. In the past a paediatrician has told me that this could be hereditary and I’m wondering now if my illness stems from something deeper than depression. Perhaps my illness is related in some way, when looking into this I found I suffer symptoms similar to that Asperger’s. However yet again I have not been listened to, which is causing myself and family to become ever more frustrated with the system.

I felt let down by Lincolnshire Hospital when I was pregnant, as I felt I had not received sufficient postnatal checks and when I did get checked, the staff were very snappy. I feel failed by the system and most of the care I have received has not been beneficial to my health. I am especially not happy with my current GP. I am made to feel invalidated and that what I am saying is stupid, I think this is partly due to my mental issues.

The main issue I am currently dealing with is that I am struggling to get the help I need. I feel my doctors are not helping to see progress and this is making things worse. Therefore I have actively tried to seek other options such as social groups in my community.

I have very much struggled in the past within social surroundings due to my illness and this has improved slightly as I have got older. However when I attended one of these social groups I found myself sat alone and feeling even more lonely, and depressed with the situation, nobody approached me and I don’t have the confidence to approach anybody else. For me living where I am now is making me worse I am struggling to see how much longer I can go on for, and there’s no support for me here.

If anything could be improved for me personally it would be the support of my doctors and help within the community, for example somebody who can understand my illness and come along as support for me to community groups. This would help build my confidence and in turn help me to meet people. All this would lead to me becoming happier and find life easier within the area live.

Another improvement I would like to see is that doctors stop treating patients in a sense of ‘one size fits all’. Budgets come from the top down and every patient has different needs, the budget needs to be used for more practical needs of patients.

All of this is causing my galactorrhea to worsen and I feel without improvement to my illness I will not see further improvement with the galactorrhea. I just need some help from somebody to improve.


Refused a diagnosis for Autism

My 4 year old son has been refused a diagnosis of having Autism even though his consultant has told me he has it. The consultant told me if they did diagnose him it wouldn’t make any difference in his life, they’ve even said they’ve never met my son before, and they certainly have!!

I’ve got a lot of medical people on my side who agree with me that it’s time he was diagnosed to get the right help he needs in life.

My son also suffers from glaucoma in both eyes and has gone through 23 eye operations so far, so that’s even more stress for me and my son of course. I’m wanting to change consultants if I can and even speak to one of the PALS officers if I can because I think this is really, really unfair on my son and he (and every other child with a disability) deserves a diagnosis and the right care in life.

He is getting so behind in life and he can’t even speak for himself, so that’s very frustrating for him. I’m not giving up until he gets the diagnosis he deserves.

From an angry parent

parent of 2

My son’s recent trip to A&E

My son woke up with a sore, swollen infected finger. As it was a Saturday I rang NHS Direct and they said I needed to take him to A&E as his fingernail would need to be drained.

When we arrived at A&E the receptionist was very friendly and very welcoming. We were directed to the Children’s A&E next door once we had logged his details.

We had only been sat down for a few minutes when a cheerful nurse came to greet us. We were taken through and another nurse took over. She was really good with my son. My son is 12 and on the autistic spectrum. He was very nervous and in a lot of pain with his finger. The nurse made a few jokey comments and really put him at ease. The whole procedure was over with in minutes.

I expected to be sat about in A&E for a long time as it was Saturday afternoon. I was amazed how quickly we were seen. The staff were great.

Thank you to everyone at A&E.


My daughter’s stay at North Devon District Hospital

My daughter was admitted following an overdose. As a parent I wanted to know the worst case scenario as to what to expect. I was given a very vague answer. I left my daughter to be looked after on a paediatric ward and rang later to find out how she was and was told that information could not be divulged over the phone bearing in mind they had been informed my daughter had autism. We were told to be in at 9am to speak to the doctor and a mental health worker. The mental health worker arrived at midday and the doctor a staggering 4 and a half hours after 9am.

Whilst sitting and waiting with my daughter, I witnessed the cleaners dusting with a dry cloth and no objects were lifted to clean under and tissues and swabs were hoovered up and not picked up. My daughter also asked for her canula to be removed at 11am because of discomfort. It was finally removed at 1.45.


Physiotherapy appointmtent for my son for…

I visited the physio department at Leicester General back in May with my son who has difficulty walking correctly.

My son is autistic, partially sighted and has CP.

Having been to hosptial previously and treated like my son has leprosy as soon as you mention autism I was relieved and surprised that my son was treated as he should be a “human being”! The person I saw asked my son questions albeit they knew he probably wouldn’t be able to answer.

The relief that he was treated with dignity was huge.

It was stated that my son would need to see orthotics and probably need special boots to assist his walking and a referral would be done and a telephone call would take place as it was not a simple case.

Here we are fast approaching September and still waiting! I’ve rang this morning to chase up the appointment to be told they are working on referrals prior to ours and its likely to be October.

I’m sorry but not good enough.

5 months is a long time in anybodies life that needs help but even more so for children.

Lack of autism awareness

I had to take a friend with autism to A&E with an eye problem on the advice of the out of hours GP. Eye casualty helpfully shuts at 12.30 on Saturdays, so we had to go to the normal A&E.

On arrival we told the receptionist that my friend has autism and was highly anxious and they advised to make the triage nurse aware. When we did the triage nurse was quite rude and just said ‘well I can’t fast track you, you’re not an emergency, you have to wait in the queue like everyone else. ‘

I fully appreciate hers was not a life or death emergency, but the triage could not even bring themself to reassure her and tell her that she would be seen as quickly as possible. The triage nurse had to bark at her and make her feel like she was after a freebie.

In the event we had to wait longer than the advertised time, but the receptionist was very kind to me when I made enquiries how much longer it would be. But by now my friend was rocking in her seat with stress.

I’m very unimpressed with the behaviour of the triage nurse.

Excellent Example of Reasonable Adjustments

I supported my teenage son to go for a blood test this morning, and was very impressed by the “Can Do” attitude of the staff. We arrived, and on seeing the rows of people sitting waiting, I was expecting that we might have to return on another day, as my son has autism and finds it difficult to sit and wait. He had never had a blood test before, and I wasn’t sure how he would react. However, I explained the situation to the staff and without any fuss at all, they agreed to try immediately, sat him in the chair and got on with the procedure. I held his other hand and tried to distract him from looking at his blood going into the tube! Chris was slightly anxious and protested mildly (mostly because he had to have his arm held still) but it was all done very quickly and expertly. All in all, I think the staff did a fabulous job, and Chris will be taking a thank you note in to them later today.