Frustrating Appointment

[beverrino]

I took my mum to the Continence clinic yesterday for her first appointment there. She is currently having pads delivered (but they say using too many) hence the appointment.
Mum gets stressed about anything different but behaves very well with professionals.
The nurse was a nice young lady and I immediately told her mum had alzheimers as I thought this would give her a better understanding.
She started asking mum questions, and as per usual mum didn't tell the truth (well she wasn't lying, it was all she actually believed at the time)
"Do the pads get very wet?" - "oh no" mum replied "I only wear them just in case". I sat shaking my head and even went on to explain that they are sodden (a very heavy bin laden with wet pads proved that)
and so it went on......
well the nurse turned to me and said "well we have to take what the patient says as the true picture". I was horrified! I said "even with Alzheimers?", she said 'Yes" - unbelievable!!
I said - "don't you have her medical records" - she was using her computer to input all the relevant information. "No she said - only our own". (This was a NHS clinic in a hospital)
well the appointment lasted over an hour and by the end of it I think she was finally beginning to understand, after I left with a headache and totally stressed out. Mum was too, she couldn't cope with all the questions and I think it cruel to subject her too them.
surely staff in a NHS continence clinic should have experience and training in Alzheimers?

 

[nae sporran]

That's not good bev.
We had a visit to the Podiatrist last week who had all C's notes and was very good at taking my opinion too. So sorry you did not get anyone close to that level of understanding or knowledge.

 

[jugglingmum]

Just awful and wrong. A child of 8 would present well, but health professionals would believe the parent, but with dementia when the PWD is so less likely to tell the truth they believe the PWD, even though they have less clue than an 8 year old sometimes.

If you've got the strength (I wouldn't have) it is worth a complaint.

It is not treating the patient with respect believing them, as this then means they get the wrong outcome, and is very disrespectful.

And the lack of linking up of medical records! When my mum had pneumonia, they refused to add it to her computer records she had dementia, because she had been diagnosed at a different hospital, even though I pointed out to them she was on Aricept and they'd say 'oh yes she has been diagnosed' .

 

[jochrisbryan]

How frustrating! I think all staff in all caring roles should have training, even an awareness course about how a patient will respond to questions, generally based on like my Granny, what she believes is the truth.
It beggars belief if I had not had similar happen, I would be more shocked, but have experienced it first hand.. Her own GP is totally unaware it seems, he asks her things like how do you feel, she will say fine. He then turns to me and says she seems OK now, tuts at me. I explain she has dementia, she also has xyz and if I ask her she says same, I have to watch for her health. Only been 3 times in 4 years and he has gone away, each time I have had to recall to get treatment later than if he was aware.
Granny had care workers before I had to move in and when she was early stage (these staff are trained surely?) paid to give Granny her meds as she kept forgetting and it was potentially life threatening, come in to give meds, 'only task' fill in the care plan saying she already has taken. The tablets still in box next to the care plan, even with highlighted bit note on care plan saying she has not had tablets, it still happened twice after. Surely a carer would know a dementia patient may not be aware and client genuinely believe she took meds.
I am so upset for you, it could have been a much better visit with a trained staff member.

 

[skaface]

Very frustrating! I would have been very, very stressed at that.

I have found that in these situations in my area, the health care professionals will take what I say to record and not mum as she is very obviously not the ticket.

The only time I don't chime in is at the memory clinic, apart from when I correct what mum is saying, for example she told the nurse clinician last time that she was an avid knitter and was always knitting. She hasn't done any knitting for many years! So I sat and just shook my head as she was saying this.

 

[Pegsdaughter]

If you are feeling strong write a letter of complaint to the head of the service. Without feedback they will not change. Keep strong.


Sent from my iPad using Talking Point

 

[beverrino]

Thank you for all your comments. I did consider complaining, but she did say she was new and I really wouldn't want to get her into trouble - she was very nice - just was not obviously knowledgeable in dementia.
At the very end of the appointment she did say she was going to recommend the number of pads to be delivered be increased to the maximum of 4 per day. But she also mentioned she would ring me today (which she has not as yet).
I think I did finally get through to her - but it was such a stressful and frustrating experience I wanted to share it.
some of the things she said were obviously very generic and aimed at everyone, but with better understanding of dementia this could have been a totally different experience.

 

[disi]

Thank you for all your comments. I did consider complaining, but she did say she was new and I really wouldn't want to get her into trouble - she was very nice - just was not obviously knowledgeable in dementia.
At the very end of the appointment she did say she was going to recommend the number of pads to be delivered be increased to the maximum of 4 per day. But she also mentioned she would ring me today (which she has not as yet).
I think I did finally get through to her - but it was such a stressful and frustrating experience I wanted to share it.
some of the things she said were obviously very generic and aimed at everyone, but with better understanding of dementia this could have been a totally different experience.

As you say so much frustration, why oh why don't the nursing staff learn more about dealing with patients who have dementia and realise that the relative/carer response should always be taken into account. It is known by US ALL that the patient is very good at telling what they think is correct. No wonder you were so stressed at the end of the meeting. I'm sorry I can't offer any real advice but send you a big hug and lots of love, Diana xxxxxxxxx

 

[1974]

Unfortunately I can't offer any useful advice but wanted to send you a big hug as I totally understand your frustration.

I've had so many conversations with medical professionals in the last year that have left me totally bewildered and frustrated in my attempts to manage situations with my mum and gran

At least people on here understand and, selfishly, I feel so much better when I hear other people's stories and realise it isn't me just being inept in handling conversations with medical professionals, it's a failing system.

Hang on in there

 

[beverrino]

Unfortunately I can't offer any useful advice but wanted to send you a big hug as I totally understand your frustration.

I've had so many conversations with medical professionals in the last year that have left me totally bewildered and frustrated in my attempts to manage situations with my mum and gran

At least people on here understand and, selfishly, I feel so much better when I hear other people's stories and realise it isn't me just being inept in handling conversations with medical professionals, it's a failing system.

Hang on in there

thakn you very much for the hug, it is really much appreciated

 

[Rageddy Anne]

Adding my hug too. With so many people living with Dementia, wouldn't you think some simple basic explanations should be part of every training programme? These misunderstandings must be wasting so much of the NHS's time and money.

 

[Kjn]

Throwing my hug in too ...total despair of people (((((HUGGGGGGGGG))))))