1. Tonilou

    Tonilou New member

    Jun 11, 2019
    1
    Good evening. We’ve been waiting to hear from the memory clinic to start the process of getting my Dad diagnosed with Dementia. His GP today has said that the memory clinic is full and not taking new patients. The closest city can’t help and we’ve been told he’ll only get help when things get really bad. Without an actual diagnosis though I can’t seem to access any help for him but getting a diagnosis seems impossible. Can anyone help? My mum is in tears.
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    hello @Tonilou
    a warm welcome to DTP
    gosh, I know services are under pressure but what your GP has said is very worrying

    I assume you are in the UK, so maybe contact Admiral Nurses as they are there to support the carer and have a lot of knowledge about local services ... if there isn't a nurse in your area, there is a helpline so have a chat with them
    https://www.dementiauk.org/get-support/admiral-nursing/

    there's also the AS Helpline, the advisors may be able offer useful suggestions
    https://www.alzheimers.org.uk/get-support/national-dementia-helpline
     
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    847
    This is very concerning. That's like saying my husband may need further investigations for gallstones, but our local hospital and consultant won't see him because the hospital is full. No magic answers I'm afraid to this.
     
  4. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    29
    Hello Tonilou,
    I’m really sorry you are all having such a hard time
    We had to wait nearly 18 months & when eventually seen my relative was diagnosed with MCI & told they could still drive. Come back in another year!
    I had to take matters into hand and had a private consultation with a neurologist for a Diagnosis
    If you can afford it , it helps move things along . If no neurologist available ask for a Geriatrician. Your doctor would have to write asking for a private consultation
     
  5. canary

    canary Registered User

    Feb 25, 2014
    9,626
    Female
    South coast
    I seem to remember that when I claimed for Attendance Allowance for my mum that i didnt actually need a diagnosis - I just needed to write down exactly what her needs and problems were. AA is a bit of a gateway towards help.
    You can also request a needs assessment from Social Services without a diagnosis (my OH didnt have a diagnosis when I requested a needs assessment).

    The memory clinic will give a diagnosis and this is important because if it is Alzheimers there is medication to slow the progression down. There is no cure, you cant halt it and medication to slow it down is only available for Alzheimers - it doesnt always work and not everyone can tolerate it.

    Im telling you this, because you may be expecting support and help from the memory clinic, but mums memory clinic did a scan, made a diagnosis, started her off on donepezil and discharged her back to her GP. There was no follow up and the only help and support I got was a fist-full of leaflets!
     
  6. mysanity

    mysanity New member

    Jun 18, 2019
    3
    I paid private for a Neurologist consultation for my partner aged 59, It was the best £90 I have ever paid out. GP's were not listening to his memory concerns. Was asked if he had private medical cover at the first consultation. When we said no, he told us not to worry since he would see him via the NHS at no cost to us. Only difference was that all appointments would take place at the local NHS hospital. Has not seen his own GP since being under the Neurologist. Same Consultant who was brilliant. Referred him to his work colleague who specialised in working with people with Memory Impairments in young people. Took 14 months to get a full diagnosis. Never once were we fobbed off. Fully recognised there was a problem but wanted to rule out other options that could cause memory impairments. During this time he was diagnosed as having Pseudodementia and put on antidepressants (Citalopram 20mg). This resulted in a calming affect and the frustration, anger, anxiety and panic attacks all stopped and enabled him to deal and accept what was happening to him. The Neurologist arranged Blood Tests, CT Scan and an MRI Scan. Non of the results were conclusive. He then arranged for a PET Scan which we were told by the staff at the PET Scan Unit was very rare. Within a week the results came back and it was confirmed he had Alzeimers Disease.(November 2018) Mild to Moderate stage but verging on Moderate Stage with MMSE Score 14. Has been on Donepezil for 8 months. Started on 5mg and after 6 month check up raised to 10mg. NHS GP informed us that they could not supply Donepezil due to costs. Neurologist told us not to worry since he could prescribe the medication. Shared care protocol has since been put in place and we now get his medication through his GP on a repeat prescription. Partner is doing exceptionally well considering his diagnosis and is living independently with help from myself and friends. When diagnosed I specifically asked the Neurologist not too take him off the antidepressant (Citalopram). I honestly believe that if he was taken off the Citalopram, he would give up and not be able to handle his diagnosis. I often wonder where we would be now if I had not made the appointment for the Private Consultation. POA is in place (Health & Finance) and I have successfully applied for Personal Independence Payments (PIP) received Enhanced for both living and mobility. I have also been able to get him Council Tax Exemption under Severe Mental Impairment. Not needing Carers Allowance as yet, but will at sometime in the future. Who knows when but how long is a piece of string. For now he is stable and only has a bad day when he misses his medication, particularly if he misses the Citalopram. Hard to say if the Donepezil is having an effect. It could be masking his true state of mind but not willing to take him off to find out. Would not have got any of the above diagnosis or treatment if I had not paid the £90 fee for a private consultation back in September 2017.
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    hello @mysanity
    just to offer a warm welcome to DTP
    now you have found this supportive community, I hope you will keep posting
     
  8. la lucia

    la lucia Registered User

    Jul 3, 2011
    591
    That's appalling because if it's Alzheimer's then the sooner medication is prescribed the better. Memory clinics don't usually keep people on their books so there should be a constant flow through.

    As others have said you can still organise the other things like Attendance Allowance (Age UK are very good at helping with forms) but you do need diagnosis to apply for council tax discount. Most important is to arrange Power of Attorney for finances and health & welfare. It's not difficult and you can download and print the forms.

    There's lots of information fact sheets on the Alzheimer's Society site here so maybe printing off some bits for your mum might help her.

    To be honest diagnosis didn't do a lot for my mum except start her on medication. She never had any scans or anything else.

    However, I would maybe try and see a different GP because that comment about the memory clinic doesn't sound right. It may have a wait for appointments but it can't block them. If you don't get an appointment I'd take it straight to your MP. It's not acceptable. Best of luck and check out the information on the site. It definitely helps to be informed.
     
  9. la lucia

    la lucia Registered User

    Jul 3, 2011
    591
  10. marionq

    marionq Registered User

    Apr 24, 2013
    5,650
    Female
    Scotland
    I’m truly shocked by this comment from the GP. That can’t be right and I would want to take it further. Some good advice from other posters of what action to take.
     
  11. Reluctantcarer

    Reluctantcarer Registered User

    Apr 14, 2019
    30
    We were luckier than you. Mum’s GP didn’t see the need for a referral to the memory clinic as ‘ what do you expect at 90 & they can’t do anything anyway ‘. However, he did refer her when I pushed back & it was really helpful- in particular putting me in touch with a AS advisor. Unfortunately, it was too late for mum to take advantage of day care centres etc as she is now bed bound.
    The point is GPs need to understand aging better & focus of giving our loved ones a better quality of life while we still have them
     
  12. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    29
    I’m now asking social services for a formal meeting to talk about my relatives living accomadations via family solicitor
     
  13. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    29
    So be very careful how you deal with social services
     

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