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Navigating the NHS as a neurodivergent person

TudorTudor Member Posts: 7 Connected
edited July 2018 in Guest blogs

Oliver is a disabled person in his late 20's. He has a diploma of higher education from the Royal Northern College of Music, and is currently studying for a BA Honours history degree with the Open University. He has a massive passion for the Tudor period of history, he also enjoys watching quizzes and history documentaries (particularly about the Tudors, and LGBTQ+ community) he loves being out in the countryside, building airfix and Lego models, playing sport, and classical music. You can find him on his blog at The Tudors make me tic.

I am a disabled person with multiple disabilities, within that I am neurodivergent. Being neurodivergent means that my brain works and thinks differently to the norm. I am autistic, mentally ill, and have Tourette’s syndrome.

Navigating the NHS as a neurodivergent person is often very difficult. Staff often do not understand that I process the world differently, including how I feel pain, and how I process where pain is in my body. Sometimes they do not know how to communicate with me. At times staff have even refused to communicate with me because I was not communicating verbally with my mouth, but rather via AAC (augmentative and alternative communication) on my iPad. I was perfectly willing to talk to the staff member and engage, but instead she accused me of not engaging and then refused to communicate with me.

oliver in wheelchair wearing sport clothing and orange top with photography equipment on his lap

When I am navigating the NHS I never know if I will get a staff member who will refuse to talk to me, or one who will actually communicate. This is something that is very anxiety inducing and makes being a patient extra stressful and difficult.

Hospitals are usually very noisy, bright, and smelly places. Whether it’s a waiting room or staying on a ward this is extremely difficult to deal with as an autistic person. I am in a state of constant sensory overload, and often have multiple shutdowns or meltdowns. This can make hospital stays extremely difficult, and they may even be counterproductive. Often staff have very little understanding of autism and other neurodivergent conditions: they question why I am wearing dark tinted glasses and have ear defenders.

I process people talking at a slower pace, and it also takes time for me to form a response, staff can be rude if I do not respond within a second. I am very understanding that they are extremely busy, and work very hard, but just because a patient responds slower than expected it is not an excuse for staff to be rude. This again makes navigating the NHS tricky

and difficult. I have to stay in hospital quite a bit, both in psychiatric wards and general wards, and the added anxiety, and sensory overload makes this even more difficult.

As someone with Tourette’s Syndrome I have both vocal, and motor tics. These can cause stressful situations in all areas of navigating the NHS, from waiting rooms to dentist appointments, from hospital stays to having my blood pressure taken, and many more areas.

Some staff I have met over the years have been great about my tics, they have been very understanding that I cannot stay still for certain procedures and have found alternative ways around this. There have been great staff who have ignored my tics and just got on with their job. If it was always like this then navigating the NHS as a Touretter (identity first language that I use for having Tourette’s) would be much easier.

A few years ago, I had a planned major operation. The pre-op nurse made navigating the NHS as a neurodivergent person relaxed and easier. She listened to my needs, took on board what adjustments I would need, and she suggested her own things which she thought may help, but did not force them on me. She listened when I explained how painful and pointless it is to take my blood pressure due to my tics.

The ward after my operation put a bed down for my partner in my room so that he could stay over to support me. The ward listened to my needs, they listened to me, and communicated with me to give me the best care possible.

As a neurodivergent person, navigating the NHS can be very difficult. It can be extremely anxiety inducing, and can use a lot of energy. Even positive experiences are anxiety inducing as I never know if a different member of staff I will see next will be as understanding.

The public can also make my NHS experience better and less anxious. In waiting rooms they can be more understanding of my tics, of me wearing tinted glasses and ear defenders, and of me stimming. Both the public and all staff can make my experience as a neurodivergent patient better by listening to me, and communicating with me.

I believe that if understanding and communication were improved within the NHS, it will continue to be valued and successful in the future too. What do you think?

Replies

  • feirfeir Member Posts: 388 Pioneering
    edited July 2018
    The NHS will always be valued so long as there is poverty.
    I think it's a shame that both the staff and patients who use it are not respected enough to get proper care. I hate it when people say 'well it is free what do you expect'.
    The consultants i've seen in the orthopedic unit  at my local hospital so far have all been great with me at explaining things and checking i understand what they said. I have a lot of confidence in them. 111 are good so far as well every time i've called them.
    I think everyone else i see is over worked and not as good with the public because of this. I agree it's not nice to be on the end of that though even if you can understand why they are being like that.
  • GeoffBosworth195661GeoffBosworth195661 Member Posts: 163 Pioneering
    Tudor @welcome Welcome to the reality Oliver of an upside down world. In a world we live in is at times misunderstood with a variety of options of how people come across. In most cases what we believe in people at times of what I have already put they are negative because they just dont understand the inner you of your needs. Yes you do have many ailments and yes some ignore and yes miss under stand and yes people you knew avoid or not see . Oliver at times the NHS system as a low vibe and other times a good vibe. It gets frustrating when they try to rush and not listen. I remember many years a go 4 men in a room. Every morning the DR comes around. they have 4 or 5 around him the Dr at the end of the bed was talking to a other Dr the patient was lying there waiting to be ready for questions and possible examine. He talked for approx. 10min and he looked at the board with the patient name on and said how are you today the reply was not to good. The Dr smiled and walked off smiling under his breath that's why he his in here for. The man felt he was neglected this Dr had out of the 4 examined which took 2min it was then he said three can go home. he pointed them out ant the fist guy said I'm in pain. He ignored him and all went. Oliver 10 min later alarm went off as a nurse who was writing down what tablets this man wanted and blood was comming up through his mouth continued. Curtains shut silence the Dr came back in oh him let me check yes get him removed we need the bed. He had died and all the Dr was interested was the bed ready for the next patient. My story relates also of not understand people with an illness. No one knows of the real pain he was going through while was talking at the end of his bed about badminton  When you stand back and look at what goes on around you ignored but trying to explain matters and you become ignored you wonder has that Dr got any sensitivity or respect. Oliver I understand where you are comming from and hope life around treats you kindly and understandable take care..             
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