Tag: A new Dementia Diagnosis

I feel sad for the NHS, I feel sad for us all in the UK who use it.   Good services in the NHS is a postcode lottery.  Sadly, those of us living with Dementia in the North East of England the service falls short of acceptable.

Go on prove me wrong!

On more than one occasion have I heard it said by Memory Clinic consultants and Community Psychiatric Nurses (CPN) that “once you have a diagnosis then you don’t need any other [clinical] follow ups because there is no treatment”.  Yes, that has been said to me with the advice that there is no point in even visiting me to check on my progress.   I felt that I knew more than the CPN about dementia and put it to him the reasons why the service should be ongoing e.g.  developing more than one type of dementia.

At present I am seeing a consultant at the Eye Infirmary because I am having real problems with my right eye.  After a myriad of tests, it shows: there is no physical abnormality with my eye, nor blood supply, my visual field test is normal, but I am missing vision in a barcode pattern.   So, areas of vision is not being processed by my brain.    This is becoming a big problem for me because my vision is becoming blurred.

I recently saw a Neurologist for the first time in this area, after one of the practice GP’s referred me, who discussed with me the problems that I am having with intermittent swallowing  issues, and the fact I have not progressed with Alzheimers in over 8 years.  I sometimes choke when I am eating;  it feels like I sometimes forget how to separate breathing and swallowing at the same time. Not majorly problematic at the moment as I always cough – then sneeze explosively scaring the life out of all those around me !   We talked about how it may be that my brain has to really focus on what I am doing to maintain the attention to do the actions.  Including automatic actions such as breathing and swallowing.   She suggested that I may be able to be referred to someone in Newcastle who specialises and does research regarding people with atypical dementias (dementia that doesn’t follow normal patterns).   She would not see me again but would write to the psychiatrist I have seen in the Older Persons Memory Clinic (there is no provision for younger people in this area) and suggest that.

Meanwhile, one of my GP’s at the Surger also wrote to the memory clinic suggesting an MRI because I have only had a SPECT scan (which measures blood flow).  An MRI would certainly give a clearer picture of my brain.

I was sent an appointment for the MRI and had it done.  Then comes the waiting for the appointment with the consultant (Old Peoples Memory Clinic) to discuss the results…………………………….

But, there is NO appointment!   What do I get – a COPY of a letter she has written to the Neurologist, who is not seeing me again, to say that to:

1)  this raises the question of whether I have Alzheimer’s,

2) I have FTD, Frontotemporal Dementia and

3) Starting the medication Rivastigmene very early has indeed had a slowing effect on my dementia,

4) All of the above

5) She is..

“..leaving and will not be able to follow this up with her but she will remain open to the team at this point.  If she does wish to have a referral onto Professor G,  I would ask Ken S to either liaise with yourselves or discuss with my replacement about the possibility of a referral onwards if necessary”

Let’s recap:   Neurologist is not seeing me again,  Psychiatrist is leaving and has no intention of seeing me or following up on my MRI.  NOBODY has discussed anything with ME and has no intention to.  IF, if I want  referral!!   Of course I want a bloody referral, well this has been left to the CPN who appears to know less about dementia than I do.  This is based on my experience in discussing with him about dementia some of it he was totally unaware of.  Maybe this is because he only sees elderly people who are in the medium to late stages of their disease.

Am I fuming?   Too damn right I am fuming.  A new diagnosis to come to terms with is not just a simple, Oh, I’ve got FTD not Alzheimer’s, or Oh, I’ve got FTD and Alzheimer’s.  The prognosis is different, this is my life, my health that nobody seems interested in.  It took me 6 months to come to terms with Alzheimer’s, is this something new I now have to come to terms with?

 TEES, ESK AND WEAR VALLEYS NHS FOUNDATION TRUST – YOU ARE TOTALLY RUBBISH!