Disabled child needs treatment nightmare

[MrsBobDylan]

I'm posting here for traffic because I need advice.

DS 11 has ASD and LD and goes to a special school. He is scared of everything and unless he is in his bed watching his iPad, he is a big ball of anxiety.

He needs a blood test and the Doctor won't prescribe a sedative to him because he's a minor.

Without it he will scream and fight and even two of us won't be able to hold him still for long enough. Plus it is cruel.

What can I do? He is pale, loosing weight and for the last year has had monthly episodes when he feels dizzy, goes limp, vomits and then is out of it for a few hours.

How do other parents with disabled children manage their child's care? It feels as if HCPs ignore the disability and treat ds as though he is just your average NT child.

In contrast, he needs regular dental care and there is a SN dental service which is awesome. But nothing like that for general health. What am I going to do?

MrsB is there LD children team at your local hospital? (Sorry for clunky terminology) Give them a ring for a steer/guidance?

Hi yes it's a nightmare isn't it, my dd has autism and severe learning disability even brushing her hair is a nightmare. The last time she had a blood test she had Emla cream which we put on 30mins before her appointment. The game changer was the doctor took the blood from her foot rather than her arm as the veins are bigger so the blood comes out quickly. We sat her in the chair with her I pad and fidget toys and he massaged her foot so that she got used to him touching her and quickly took the blood.
She also had a cannula in her foot rather than her hand when she had her tonsils out.

Oh @MrsBobDylan I know exactly how you feel and it really annoys me to hear nothing has improved over the years.

My, now adult, dd has severe learning difficulties along with an unusual form of epilepsy. Thankfully, for some strange reason, she has always been ok with injections but we have massive issues with x rays and dental treatment. ☹️ Staff just don't have a clue how to deal with these young people!

Is your DS under a hospital consultant or a social worker at all? If so I would suggest contacting them for help with this as it does sound as if there is a problem.

May also be worth speaking to someone at Mencap or similar to ask if they have any suggestions.

I wish I could give you a definitive answer but I am having the same issue with our special needs dental clinic as, fortunately, our dd has beautiful teeth but chipped a front one 2 years ago. I desperately want her to have it repaired but the lady dental consultant hitler doesn't feel it is important enough as dd would need sedation at the hospital. I have offered to pay as we would prefer not to use the NHS anyway but apparently there is no way we can pay privately and it appears this bloody woman has the final say. 🤬. All I want to do is ensure my dd doesn't lose one of her front teeth!

Why do these health professionals make life twice as hard for us?

Really, really hope you get help with this and very soon, OP. Might also be worth contacting PALS at your hospital. Whatever it takes! Your boy needs a blood test!

I don’t mean to be ignorant so please tell me why this stern nhs dental consultant has the final say over whether you can pay privately to fix your daughter’s tooth? Is it only the nhs special needs program that is authorised to use the sedation method your daughter requires?

I’m pretty horrified - I’m hugely dental phobic with a history of trauma & assault so the idea of someone dictating whether a person can pay to access emotionally-safe care is terrifying.

And really sorry to hear that the OP’s boy isn’t receiving good care. I hope the EMLA cream and foot idea might help a bit. It’s a disgrace that mental health is so horribly ignored in this (and many other) countries.

@PolkaDotBalloon

I don’t mean to be ignorant so please tell me why this stern nhs dental consultant has the final say over whether you can pay privately to fix your daughter’s tooth? Is it only the nhs special needs program that is authorised to use the sedation method your daughter requires?

I’m pretty horrified - I’m hugely dental phobic with a history of trauma & assault so the idea of someone dictating whether a person can pay to access emotionally-safe care is terrifying.

They can't if you find another consultant to use who agrees to it. It's not compulsory to use the NHS.

Failing to make reasonable adjustments is automatically unlawful discrimination under the Equality Act.

Have you asked them why they're refusing to honour the public sector equality duty or their other responsibilities under the Act? Or pointed out this is unlawful discrimination?

Legally, they don't get to effectively deny access to medical care to disabled people because they can't be arsed to meet their needs.

You might need to remind them of this. You shouldn't have to.

Ask for the bloods to be done at the children’s ward in the hospital. They can do numbing cream and quiet spaces etc etc. Easier than you would imagine. Talk to his consultant.

It sounds harsh but my friend only got help for her DD (severe ASD as well as a physical disability) after taking her to a hospital appointment and leaving her there. She refused to pick her up and it was at that point where social services got involved that she got all the help she needed. I’m not suggesting you do that but it might help to call social services and tell them you’re getting to that point?

It's not compulsory to use the NHS.

No, but it is compulsory for the NHS to adapt the way it does things in order for disabled people to be able to access care and to be able to access that care without being harmed due to a failure to adapt to their needs.

You can get numbing cream from a pharmacist, that they normally sell for people scared of tattoos.

Is he having the blood test at the GP or a hospital? Some hospitals have learning disability liaison nurses. You could call PALS and ask.

This might help with desensitisation techniques to help your DS prepare for the blood test. If he is attending school ATM, they might be able to help prepare him too:

www.gov.uk/government/publications/blood-tests-and-people-with-learning-disabilities/blood-tests-for-people-with-learning-disabilities-reasonable-adjustments-case-studies#safe-holding-and-sedation

I would recommend using emla cream too.

www.emla.co.uk/emla-for-kids/

@TakeMe2Insanity

You can get numbing cream from a pharmacist, that they normally sell for people scared of tattoos.

No they don't. It is unlicensed for tattoo pain and you shouldn't be able to buy it for that. If you ask for it for a child for a blood test, they may sell it but you shouldn't have to pay for it.

Going against what many others have suggested I would avoid numbing cream, for DS that massively adds to the anxiety as it lengthens the process. We now have in his hospital passport that they have to use the numbing spray instead which works instantly and much better.

We also work closely with the play specialists at both hospitals we use so they can support him and make sure each department know exactly what is needed

It sounds as though it’s not Emla cream you’re asking for OP but a sedative? That’s quite specialist for the average GP (I am one, for reference) and if the blood test is planned to be done at the surgery I certainly wouldn’t be sedating children as they can’t be monitored etc safely.

Is it an option to go to the hospital instead? If so maybe you could ask your GP to liaise with the paeds consultants to sort something appropriate? As pp have said children’s wards are much better set up for this sort of specialist care and have more experience in providing it. Also echo the poster who suggested speaking to the LD liaison team at the hospital as they may be able to help. It’s often difficult with children like your son because they don’t have a general paeds consultant and it does feel very disjointed. I have previously had big problems getting appropriate care sorted for teenagers with LD because they’re ‘too old’ for paeds (even at 16) and adult care isn’t remotely appropriate for them. So stressful.

I wish you all the best with getting it sorted - I know it can be a nightmare getting seemingly simple things sorted out.

Thank you for the lovely responses. It means a lot to know that we are not alone, although I wouldn't wish this on anyone.

I can completely understand the doctors reluctance but am going to speak to her again tomorrow and ask if he can be seen in a children's ward as suggested above.

He is so touch resistant - he hasn't had his hair shampooed for four years because he can't stand things touching his skin. He only ever wears one lay of clothes and wears furry-lined crocs out in the snow

He used to have a paed assigned to his school but that was taken away in September. I have been waiting since October for an appointment to see a paed since Oct but fucking Covid is delaying that.

He is such a lovely child but I can't stand the second-rate service he gets and the discrimination he's suffered.

I mean, if we want an example of how little LD people matter to some sections of society, you only need to look at how low down the list they have been for the Covid jab, until Jo Whiley spoke out.

I will think about the foot too, I would never have thought of that in a million years!

My ASD DD has had a few blood tests and we take her to the Children's unit at the hospital where the Paediatricians see the Children

They have Nurses there who only deal with Children, they have a television in the room and my DD sits on my DH's knee with her arm sticking out under his arm so they are not in her eyeline.

They use a spray that is cold and numbs the area immediately and I distract her with toys or anything and they take the blood.

As soon as we walk out she has forgotten it happened, as long as the plaster is taken off.

She does not like waiting so the spray works best as does not like anything being put on and then having to wait.

Also before you go ask them if they can send photos of the department (or even if he can visit) then you can make a social story explaining what will happen

@Prestissimo it is at the hospital but just the bog-standard place they send everyone. Good suggestion about the children's ward.

Another gripe - can they really never let my son jump the queue? I would be more than happy to have a LD child who was losing his mind with fear and his parent sweating and getting kicked and thumped go ahead of me. They will never do it though, computer says no!

Again they should do just that. Or at least find somewhere quiet for him to wait. Ds name flags up on the computer system so when we arrive if he can’t be seen straight away we are taken into a side room where he can wait without the stress of the waiting rooms.

@Sirzy part of my massive emotional frustration right now is that I have really let ds down in the past by not advocating well enough, not pushing hard enough. I am not good enough for what he needs.

It is really good to know that your son has that - I will push for that in the future.

Really is it just in general phlebotomy clinic? That sounds awful. I would certainly ask if it could be done on the ward. That way you’re at least likely to be in a calm room until the drs are ready for you, rather than in a waiting room with every Tom, Dick and Harry. And do ask about play therapists as well, as suggested above.

The cold spray people are talking about is Ethyl Chloride and can be really effective. I’ve used it in the past for very needle-phobic children at the surgery. Can be less stressful than Emla cream because no build up/associated plasters etc especially if your son is very sensitive to touch.

Just thinking that another route for you would be to ask on any local parents’ groups for children with LD/ASD how they have had bloods done successfully in the past. It shouldn’t be the case that you have to do this research but the reality is that most GPs at least don’t have that many patients in this specific situation and so don’t know how to open the right doors (or even what those doors are). It’s shameful that there isn’t a LD helpline that we can just ring and say ‘this is the issue... please fix’ but that isn’t how it is. If you had someone else’s hard-won solution then it may be easier to get it working for you.

All the best with it.

Speak to his Special School as they may have some calming exercises they can do with him and make it part of the day to talk about hospitals etc. or make a social story up for him.

My DD does things at her Special School that she will not do at home so it may be worth asking their advice,

And it is absolutely not the case that you aren’t good enough a parent @MrsBobDylan. You are everything that your ds needs - it’s the system that is letting him down here.

They can make adjustments but they may have a difficult balancing job to do that. (Eg we are usually given the very first slot for theatre so ds doesn’t have so long to wait, but we’re bumped because a child who unexpectedly was not coping needed to go first. It was actually very hard and has caused a few on going problems for us but at some point someone has to choose.)

As a total off topic aside we have made a very successful transition to snow boots for winter from furry crocs.