Struggling to get a diagnosis

[Vikki B]

Hi, my mum’s had memory loss for the last 5 years. She managed with support from my dad up until Nov last year when she fell and broke her hip. She came home from hospital with much worsened memory and confusion. She’s had a second fall, likely due to a uTi/constipation and has had a significant deterioration in her memory, confusion and also now aggression and high levels of anxiety. She went from mild-moderate memory issues to an advanced symptoms.

She is now in an assessment bed where she’s been for 8 weeks and the plan is to go to a care home with nursing permanently.

She has never been formally assessed and diagnosed. We had a referral after her hospital stay in November. She was due to go for a clinic assessment however fell a week before so they discharged her.

The memory clinic won’t accept a referral back until she’s left the assessment bed which could take another month or longer as we are looking for a permanent nursing home care.

I cannot get a satisfactory explanation as to why they won’t see her and they are keeping her waiting. Whilst I recognize there may be some delirium there is also a clear underlying, long standing dementia.

Does anyone know the reasoning for this beyond trying to keep waiting lists down?

I find it frustrating they won’t assess her despite it being the reason she is now in an assessment bed in the first place.

To me it’s like someone coming into hospital with a chest infection and being treated but they have clear evidence of an underlying lung cancer but the doctors not assessing the cancer or even accepting a referral until the chest infection is cleared and they’re home.

 

[Vikki B]

To clarify - she fell a second time due to her confusion and went into hospital and the memory clinic discharged her.

 

[backin]

Most assessments don't take place when the patient is in unfamiliar surroundings as this won't give a true baseline.
Having said that the discharge to assess was the place it was decided my mum no longer had capacity, though she had been diagnosed several years and the social worker was happy that she lacked capacity with my input into the process.

 

[Vikki B]

Thanks. Glad they were sensible re capacity assessments for your mum.

I can sort of understand that if the difficulties were mild, but mum has advanced to a stage where nothing is familiar to her unfortunately. She’s been in the d2A bed for 8 weeks and is still deteriorating cognitively before our eyes. She knew her date of birth and who her immediate family were 8 weeks ago and now she can’t recall either. She has gone from fully continent to doubly incontinent. She needs a specialist nursing home as she is sometimes needing 3 staff to help when she has aggressive outbursts. She’s 1-1 at all other times.

I am not convinced a move to a permanent care home is going to make a difference as it will be unfamiliar to her anyway. The memory clinic assessment we were due to have (but cancelled as she was in hospital) was at a clinic not at home.

She’s had a CT scan and ECG after falling the second time. I kinda feel the CT scan should really help them see what type of dementia this is. I am not sure what they’re waiting for. It feels like they’re saying a blanket no and not looking at the individual circumstances.

It’s frustrating as my lovely, gentle mum is slowly disappearing and the memory clinic set up to help is just putting unnecessary barriers in the way.