I can't believe that a nurse would believe such a horrible thing,never mind say it out loud.

[FuriousGeorge]

As some of you may know,my uncle who as SN,including cerebal palsy,spina bifida & learning difficulties.He is also registered blind & deaf.

He has been in hospital for about 6 weeks now & the treatment he has,or rather hasn't recieved has horrified us.He is due to have a catheter removed today & my mum asked if he'd have an anaesthetic.The nurse answered that he probably would,but that 'They don't feel pain like we do,do they?'

Mum was shocked & confused & didn't know what to make of the comment,until she read his notes.The hospital have him down as having Downs Syndrome,which is incorrect,but when my mum told me,we realised why the nurse had said what she did.Apparently there used to be a belief that patients with DS didn't feel pain,but surely in this day an age,that isn't still taught.Or is it?

I am horrified at the thought that someone possibly wouldn't get pain relief,just because of their genetic make up.Can anyone tell me what we sghould do about this?We are going to make a complaint about my uncle's abysmal treatment anyway,but this has made us even angrier than we were before.Perhaps it explains why his treatment has been so,so poor.

In my experience, Nurses and Dr's in General hospitals know little or nothing about how to treat people with special needs, they would not receive much training in these matters.
Truly awful that your poor uncle had been treated so appallingly, def complain and also forward your letter to the health minister.

You wouldn't normally get anaesthetic to get a catheter inserted or removed unless it is a super pubic catheter?

Thanks Louii.It is inserted into a wound in his groin.It has been infected twice,but no one seems bothered.One nurse refused to get Dr to look at the infection because it was a Sunday!

Good point about forwarding the letter to the Health Minister! Thanks again.

you dont normally have any anaesthetic to have catheters removed

but thats beside the point

how old was this nurse? did you report her?

nurses do have special needs training as part of their overall training. they have placements working with adults who have special needs

i h ope your uncle gets better soon furiousgeorge

Sounds like a super pubic cath, he should def get an anaesthetic for that.

Poor uncle, hopefully he will be getting out soon.

Doesn't matter what day of the week he needs a bloody Doctor, I hope he is on an antibiotic to clear infection, maybe they think people with special needs don't get infections as well as not feeling pain.

Make your complaints official, contact MP/MSP as well, they will be able to assist you.

Regards
Lou

good grief. Its why dd is never left alone for 1 second at a hospital. She has severe CP and is registered blind.

write to the Chairman of the Hospital trust, or email, as that will make sure that IGNORANT nurse never talks about a fellow human being like that again. She could be danger to others with that ignorant attitude - FFS, did she do her training in the middle ages or something?!!

i would complain, ive never heard of anything s o awful

Oh my! That is appalling

Oh do complain

i have to say this

i work in a general hospital. sometimes we get adults with special needs. they are usually in for some other reason tho - could be anything at all. i really enjoy caring for adults with special needs. if i dont understand their condition i go away and read up on it. even at home. only takes 5 mins to get the basic idea of any condition

I am a nurse and I'm ashamed to hear that another nurse would say something like that

I trained in the early 90s and we didn't get an awful lot of training in mental health and mental handicap (as it was called then). So I certainly wouldn't call myself experienced in caring for adults with learning difficulties. But I would never think, let alone say, something like that.

You must complain. I complained to the PCT when my then 2 year old DD received awful treatment from a radiographer - and I was with her! If we don't complain then attitudes (and training) towards adults and children with LD will never improve.

(PS It's not usual to receive an anaesthetic for the removal of catheters or drains. Even suprapubic catheters are usually removed without anaesthetic. Not that that excuses her shocking comment.)

terrible that he was treated so poorly. Terrible that he had been mistreated due to because they thought he had down syndrome - even scarier that he would not have any of the physical markers for ds and yet no one thought to question his notes.

Fwiw - total BS that people with down syndrome do not feel pain. My dd1 does.

As to what to do - write to CEO of hospital, as well as head of Nursing and write to health minister. Or better still write to head of nursing and put cc Health minister and CEO of hospital trust at bottom of her letter and send it to them.

Each trust has a procedure for complaints - would seek out that info as well and follow it.

In your letter - would list everything that has happened including the fact they have his information incorrect!!!!!!

Then state what you would like to see - nurse sent for training with regards to caring for patients with sn, nurse having to educate herself with regards to ds, hospital notes corrected!

I find if you state what happened in factual even bullet point form and then what you would like to see happen then you are more likely to get a response than if you just complain iyswim. if you tell them how you want it fixed they seem to find that easier to respond to than just saying - it is not good enough.

hth.

Please complain. Perhaps a list of incidents to the head of PCT as well as whoever else you can think of (I cc complaint letters far and wide). Do send a copy to your MP, but also to your, or perhaps your uncle's local councellors- they're often more hands on at dealing with complaints (when I complained to my MP about lack of SALT I received some sort of electioneering letter back about how wonderful the NHS was under labour vs the tories- I could have brained the blasted woman).

I'm horified but not surprised. I've seen some awful treatment of my PMLD students (I'm a teacher) whilst they've had to stay in hospital. I remember one particularly awful incident where staff were told a boy would need to be supervised in a regular ward, he was shut away in a side room and fell out of bed (he has no saving reflexes or ability to move anywhere once on floor or call out for help!)

Staff on NHS general wards can find dealing with SN patients very difficult but there is no valid excuse for what your uncle has suffered. And that comment needs to be reported in a formal complaint asap!!

I hope you get some resolution for this awful situation. I'm thinking of you and your family.

Thank you all for your support & suggestions.I am going to print off this thread & pass it on to my mum,who has been keeping a diary of events.She is planning on complaining to the NHS Trust anyway,but I will encourage her to send a copy to the heath minister & anyone else suggested.

I'm still shocked to the core that in the 21st century,people with SN are sidelined & treated 2nd best.I truly feel for anyone trying to get help for a family member with SN now.

FuriousGeorge, Unbelievable

You must complain to the press aswell. The public needs to know that this sort of thing goes on.

I hope your Uncle gets better and feels more comfortable soon.

FuriousGeorge you MUST complain about the HUGE mistake on the notes (and that IS huge!) and the nurse's misconduct. It makes me and to hear about such ingorance and fearful for my own DS.

My dad has his supra pubic catheter replaced every 8 weeks and does not have any kind of aneasthetic nor to the best of my knowledge is it a precedure that usually requires one.

Are you sure this women was an actual nurse? I cannot imagine a real nurse being so ignorant?

You should definately complain, she clearly needs further training.

Within the last few years I read an article (in Sun Times supp) that until recently premature babies were believed to not feel pain in the same way and regularly had surgery/treatments without anaesthetic and often died of shock as a result.

It was about, poss the Swedish method of looking after SCBU babes. I had recently spent week in SCBU with Ds and could see that the LOs often were not handled repectfully or kindly.

Am not so surprised at the attitude of the nurse having spent many a night with my DS in general hosps where the staff have no idea.

I'm sad for your uncle that he gets such disrespectful treatment.

I'M ABSOLUTELY HORRIFIED THAT THIS 'NURSE SHOULD SAY SUCH A THING, HOW BLOODY DARE SHE . I WOULD HAVE STOMPED ON HER TOE ON THE WAY OUT TO FIND THE WARD MANAGER I HAVE ALWAYS INSISTED ON STAYING WITH MY DAUGHTER [WHO HAS C.P.] WHEN IN HOSPITAL BECAUSE I KNOW THAT FROM MY EXPERIENCE THE NURSES DON'T HAVE THE TIME TO GIVE THE EXTRA CARE NEEDED. MY DAUGHTER IS NOW 18 SO NEXT TIME SHES ADMITTED SHE'LL BE ON AN ADULT 'MIXED' WARD. I WILL STILL STAY WITH HER NO MATTER WHAT EVEN THOUGH IT WILL BE FROWNED UPON.

Outrageous, why are people nurses if they aren't interested in caring for someone who clearly needs it? bizarre.

Salsmum. I don't think it is frowned upon.

My ward is so short staffed that if my family member was admitted there...I would stay with him/her 24/7. The nurses I work with are brilliant and I have the utmost confidence in them but they are overwhelmed. The situation is way beyond what any nurse/human could handle.

I think you are smart to stay with your daughter. As a nurse, I would not be insulted I would be grateful.

furious george, that is awful, how is your uncle doing now?