Where do we go from here?

uknick

Registered User
Jun 7, 2006
5
My girlfriend's mother was admitted to hospital at the start of April with severe hallucinations which finally resulted in her spending the night in the her garage (it was -2 degrees that night). She thought she had an intruder in her home. (typical symptom of dementia I have since read). She is nearly 80, a widow of three years and lives on her own.

Yesterday we had the first case conference with the NHS medical team. That was a surprise. We walked in to find 8 NHS staff present!! Strength in numbers no doubt. Anyway, the consultant confirmed a diagnosis of Alzheimer. But also said it was too early to release her as they wanted to up her dosage to try to reduce the hallucinations. We are due to meet again in about two months, at which time they will have a better idea as to her future requirements.

What the NHS would not answer is, where do we go after the next case conference?

Ideally we would like her to be back in her own house. Prior to her hospital stay she appeared not to need any social care. However, it is clear that she can't be trusted to take her medication. She denies there being anything wrong with her. (Another typical symptom of the disease it appears). She also stopped taking the anti-psychotic drugs originally prescribed. Hence the garage visit.

We would like the NHS to provide a trained nurse to visit daily to a. make sure she takes her medication and b. more important, their trained eye will spot any deterioration. The NHS team appeared to agree with this type of support but would not commit at this stage.

What is usually the next stage? And does anybody have experience of the NHS providing daily medical visits?
 

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
hi uknick, and welcome to TP.

I guess the nhs can't say what's going to happen after the next case conference. It sounds as though they need more time to assess and see how she goes on her medication. If they knew now what would happen then, they wouldn't need to wait until then. It's difficult though living with that degree of uncertainty.

When my dad was diagnosed the consultant suggested that social services would take him into residential care without they'd tried a high level of home support coming in to visit, plus day care. That's not what happened though as it was realised he wouldn't be able to manage at home.

I don't think it's usual to send a qualified nurse in every day to give medication - unless it's an injection or something more tricky to give. Social services have home carers who are able to supervise people taking medication, providing it's dispensed in special containers from the pharmacy. Carers would also be able to spend a bit of time with her, help with various things such as preparing meals, making phone calls, getting bathed, dressed etc as well as being on the whole pretty good at spotting any changes from day to day and taking appropriate action. I can see why you might want a trained nurse - but I think an experienced, trained carer spending a bit of time with someone, doing daily activities is more likely to be able to spot problems than a trained nurse popping in for a couple of minutes to give medication.

let us know how you get on?

Áine
 

Lila13

Registered User
Feb 24, 2006
1,342
For a few months my mother had NHS nurses coming in twice a week, but then suddenly they decided to stop as they said she was so much better!

The carers (from Social Services) were supposed to contact a doctor or nurse if she got worse again, but failed to notice. They aren't adequately trained to notice.

The carers didn't have control over her medication, she said she didn't need carers to give her pills.

Lila
 

jarnee

Registered User
Mar 18, 2006
181
leicestershire
Hi

Before my dad had to go into care (when mum was still alive) we contacted social services who sent out a CPN (Community Psychiatric Nurse) to assess dad and liaise with us and social services about the level of support he needed. We were about to have a discussion about the possibilities of day care; someone to come in a couple of times a day to make sure he'd washed (or help him do it if he couldn't himself)etc; and all sorts of other support at home. It never happened cos things turned suddenly pear-shaped for us, but that's another story.

Anyway, the point is, there is support from CPNs, social services etc. A friend of mine has such help for her mum. She said the support workers operate in teams so her mum gets the same people all the time . The "team" who came out to help her mum just didn't get on with her at all, so my friend requested another team....which, apparently you have a right to do, but they don't always tell you this.

Hope that helps a bit
Jarnee
 

uknick

Registered User
Jun 7, 2006
5
Update.

We had the latest case conference. Message was, mother is now bed blocking so get her out.

NHS proposal for discharge conditions;

  • pills twice a day (not unexpected)
  • hopsital day clinic once a week (not unexpected)
  • Community Psychiatric Nurse every two weeks (not unxpected, weekly would be nice)
  • buy pill dispenser (good idea)
  • care worker to check medication taken (once a day). Care worker to be funded by mother (she has funds at present).

Hang on there we said.

If NHS is saying they want us to to arrange care worker to ensure she takes her medication surely that is medical care. Are the NHS not obliged/mandated to pay for medical care?

Well the doctor says, we do not have the resources for this. Note subtle use of words. He does not deny the NHS legal obligation but blames it on funding shortages etc. The case meeting was not the place to discuss this as mother was starting to get very agitated that she might be in for a long stay. So we leave to consider their proposals.

Next day. Daughter calls doctor to point out the legal position, he puts phone down on her. One assumes she had him by the ***** and he had no other option but to hang up. Anyway, seeing as the NHS are now emotionally blackmailing us into getting mother out we decide to fund the care worker.

Daughter calls doctor to tell him this, without any predjudice, in case we want to take it up at a later date. Doctor not available. Message left with secretary

Next we hear, mother has been asked to sign her release papers and agree to fund the care worker. A patient diagnosed with a mental illness, asked to sign important papers. Where have I heard that before?

Oh yes, Panorama a couple of months back. They showed how a consultant was caught putting pressure on the patient to sign papers to agree to fund her care.

Daughter now preparing to talk to local MP and Daily Mail.

Anyway, we are now looking for a care worker. Straight forward you would have thought. I did. How wrong could I be? Where we live there is a three month wait. So, we have written back to the hospital so see what they suggest so they can clear the bed.

Any thoughts that may help us.
 

shauny

Registered User
Oct 27, 2005
57
north-east england
problems

Hi Uk Nick, im a social worker who uses talking point as a guide in my day to day work. My advice is to see if u can get an independent advocate for your mum as soon as possible citizens advice bureau is a starting point and explain the situation. It does sound like nhs emotional black mail i deal it with every day, do not let them bully u go for it and let us know how u get on. Shauny.
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades