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Very long wait for treatment

Islamag

New member
Oct 23, 2020
5
Hi,

My husband has been diagnosed with mixed dementia, Alzheimer's and Vascular. He first went to see the GP in January this year and it was decided he needed to attend the hospital for tests. The resulting diagnosis we eventually got in a phone call at the beginning of September, after long waits for a scan and phone conversations with the consultant.

However, I have noticed some deterioration over the last few weeks which concerns me. He does not yet have the medication we were told during the diagnosis phone call would be prescribed for him. They were just waiting for the results of his ECG and would then write to the GP with details of the medication to be prescribed. All that was completed by early September but we are still waiting for him to get treatment and now it is almost the end of October.

I know there is no cure but I so desperately hope the medication will slow down the pace of the disease. The whole process has dragged out for so long and I can see he is having more problems as time passes. I know everything is affected by COVID, but we are in a low-risk area and the hospital does not have a lot of people being treated for the virus. It concerns me that it is taking so long from diagnosis to starting medication when we were promised it would be started and all that was required was for a letter from the Consultant to the GP.

That letter has not yet arrived and I am wondering if other people are experiencing the same long delays in the treatment. I realise the NHS is very busy but people like my husband and many many others still need to be treated. Can I ask if anyone else is experiencing such long delays in starting treatment, particularly if you are in a low COVID case area?

We have been through the same process with my mother and with my husband's parents they all developed dementia and we had to cope with all three of them. It was a long and very difficult time in our lives caring for them and then having to contribute to their fees in a care home. It left us emotionally and financially drained. This eventually ending in 2014 when my mother died. I am heartbroken that only six years later we are facing this again ourselves. I know what is ahead of us and I dread it. I am badly disabled with arthritis and have angina, I need to use a wheelchair outside of the house and I have a lot of serious concerns about how I am going to care for him.

I just wish the process of starting treatment was not taking so long, but perhaps I am being unreasonable in my desperation to keep him as well as possible for as long as possible.
 
Last edited:

karaokePete

Registered User
Jul 23, 2017
5,655
N Ireland
Hello and welcome @Islamag.

You aren't being unreasonable as it's natural to want the best for your husband.

My experience has been that communication between the hospital and GP has been very slow during the Covid crisis. My wife was to have a change of meds in early summer and the GP wasn't informed, as they were supposed to be. In our area we have people called dementia navigators and I was able to make contact with that person via our social worker and get matters progressed.

In relation to the meds, my wife was prescribed both Donepezil and Memantine when she received the same diagnosis as your husband. My wife tolerated the meds very well and they did make her much brighter for a while. As you say, there isn't a cure so my wife's dementia has progressed and no-one will ever know if that progression has been slowed or not. What I can say is that my wife was taken off the meds for a short while and a rapid deterioration set in within a short period of time. Happily she was put back on the meds and returned to her previous state. Not everyone can tolerate the meds and then not everyone benefits from the meds - this is something that has been discussed many times and you will find the threads if you use the 'search' facility.

Best of luck to you and your family.

Do keep posting as this is a great place for information and support.
 

RosettaT

Registered User
Sep 9, 2018
515
Mid Lincs
My OH was diagnose in 2017. We went to the Dr in February and it was September before he he was given the diagnosis by the consultant so 8mths, it's not a quick process usually. I pestered the clinic in the end as it took over 3mths for the result of his scans to come through.
Ring them and ask when you can expect to get the letter.

I sympathise with you @Islamag, my mum had dementia for 20yrs and within 12mths of losing her, my beautiful husband was diagnosed. It was soul destroying and I couldn't believe I was going to have to go through it again. Saying that I'm not sure if dealing with mum gave me patience and strength or if it's because my OH is love of my life but things are nowhere near as bad as I feared. He takes all my time up but I have no mental anguish at to deal with.
I wish you strength.

(((Hugs)))
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,142
Kent
Hello @Islamag

My mother died in 2002 after having dementia for 8-10 years and my husband was diagnosed in 2005 after a few years of struggling to get a diagnosis so I do know where you`re coming from.

My husband was offered medication immediately following diagnosis. If you`ve had a diahnosis and a recommendation for medication I don`t understand the delay in prescribing even with COVID.

The GP should surely have the results of the ECG by now and I would suggest you ask them why there is such a delay.

You are obviously going to need help even in your husband's early stages
and I`m afraid if you don`t ask you run the risk of being overlooked.

Keep reminding these people where you are and hopefully you will get the medication which might help your husband.
 

Weasell

Registered User
Oct 21, 2019
760
I would write to the the GP.
If possible I would pay for the letter to be signed for.
i would put in the detail you included in your very articulate post.
I would add that I felt the delay was now causing me health issues due to stress.
I would request to know when the matter would be resolved.
I would include a stamped, addressed envelope.
 

canary

Registered User
Feb 25, 2014
13,964
South coast
I wouls also get in contact with the consultant at the hospital in case the letter was overlooked and not sent to the GP
 

Islamag

New member
Oct 23, 2020
5
Hello and welcome @Islamag.

You aren't being unreasonable as it's natural to want the best for your husband.

My experience has been that communication between the hospital and GP has been very slow during the Covid crisis. My wife was to have a change of meds in early summer and the GP wasn't informed, as they were supposed to be. In our area we have people called dementia navigators and I was able to make contact with that person via our social worker and get matters progressed.

In relation to the meds, my wife was prescribed both Donepezil and Memantine when she received the same diagnosis as your husband. My wife tolerated the meds very well and they did make her much brighter for a while. As you say, there isn't a cure so my wife's dementia has progressed and no-one will ever know if that progression has been slowed or not. What I can say is that my wife was taken off the meds for a short while and a rapid deterioration set in within a short period of time. Happily she was put back on the meds and returned to her previous state. Not everyone can tolerate the meds and then not everyone benefits from the meds - this is something that has been discussed many times and you will find the threads if you use the 'search' facility.

Best of luck to you and your family.

Do keep posting as this is a great place for information and support.
Thank you.
 

Islamag

New member
Oct 23, 2020
5
My OH was diagnose in 2017. We went to the Dr in February and it was September before he he was given the diagnosis by the consultant so 8mths, it's not a quick process usually. I pestered the clinic in the end as it took over 3mths for the result of his scans to come through.
Ring them and ask when you can expect to get the letter.

I sympathise with you @Islamag, my mum had dementia for 20yrs and within 12mths of losing her, my beautiful husband was diagnosed. It was soul destroying and I couldn't believe I was going to have to go through it again. Saying that I'm not sure if dealing with mum gave me patience and strength or if it's because my OH is love of my life but things are nowhere near as bad as I feared. He takes all my time up but I have no mental anguish at to deal with.
I wish you strength.

(((Hugs)))
Thank you, it was difficult with our parents emotionally and left us with no money at all for our retirement. 3 lots of nursing home fees over a total of 15 years was really difficult. But we were both employed then and other than paying our bills everything went to the care homes. Our son and daughter had to help us to get food sometimes and it was hard for all of us. But they needed 24-hour care and as I am disabled I could not care for them at home for more than a couple of years each time. I am just devastated that it is happening again and my disability has progressed so much that I am more dependent on him than he is on me at the moment. But I know only too well this will change. He will need proper care and somehow I need to manage that and keep him at home.
 

Islamag

New member
Oct 23, 2020
5
Hello @Islamag

My mother died in 2002 after having dementia for 8-10 years and my husband was diagnosed in 2005 after a few years of struggling to get a diagnosis so I do know where you`re coming from.

My husband was offered medication immediately following diagnosis. If you`ve had a diahnosis and a recommendation for medication I don`t understand the delay in prescribing even with COVID.

The GP should surely have the results of the ECG by now and I would suggest you ask them why there is such a delay.

You are obviously going to need help even in your husband's early stages
and I`m afraid if you don`t ask you run the risk of being overlooked.

Keep reminding these people where you are and hopefully you will get the medication which might help your husband.
Thank you, I am going to call the surgery again this week and give him the phone. It is difficult at this stage as they will only speak to my husband about it, as he is still capable of understanding and making his own decisions. But he will not call them, each time we have to take a step forward with this I have to persuade him to take it. I think each little thing makes it more real for him and he is avoiding that. We need to have a conversation about all of it, but he is still at a stage of coming to terms with this and I have to take it a step at a time. If I don't we will end up 2 steps forward and 3 back. We have been together for nearly 55 years, so I know when gentle persuasion is the only answer and this is one of these times.
 

silkiest

Registered User
Feb 9, 2017
171
Hi @Islamag, if your husband is still capable of giving consent I would strongly advise you to go on .gov.uk website and apply for power of attorney for health and welfare. Register it at the same time as you apply. Once you have it the surgery and any other health professional will have to talk to you. It would be wise to apply for finance POA at the same time. If you struggle with the forms places like Age Concern or local carers charities will often help you complete them.
If you do yours at the same time it will enable your family to help you also with less hassle
 

Islamag

New member
Oct 23, 2020
5
Hi @Islamag, if your husband is still capable of giving consent I would strongly advise you to go on .gov.uk website and apply for power of attorney for health and welfare. Register it at the same time as you apply. Once you have it the surgery and any other health professional will have to talk to you. It would be wise to apply for finance POA at the same time. If you struggle with the forms places like Age Concern or local carers charities will often help you complete them.
If you do yours at the same time it will enable your family to help you also with less hassle
Yes thanks, I have all that in progress and we have a solicitor doing new wills for us and POA for both as well. It has all been delayed because of COVID and them being closed for so long, but we are sending off paperwork to the solicitor this week. I know how important it is because our parents, 3 of whom developed dementia completely refused to do a POA. We asked them when we realised what was happening but none of them believed there was anything wrong with them and did not see the necessity to do that. They believed they were perfectly compos mentis until the day they died. In their heads, everyone else in the world was out of step but definitely not them. None of them had any insight into their mental condition at all. On both sides, we had very domineering parents who in their minds were right about everything all their lives. My mother was still treating me as if I was a child when I was in my sixties and spoke to me as if I was at primary school. Each of them was difficult in their own way and it made caring for them a daily challenge. Being badly disabled with arthritis made it doubly difficult for me as every move is painful. But not having a POA for any of them was just a nightmare. I never want to put my family through any of what we had to deal with and I will make sure everything is in place legally.
 

MartinWL

Registered User
Jun 12, 2020
422
Regarding contact with GPs many now have online systems that enable patients or carers to log requests for advice, prescriptions, appointments etc. My own GP uses "e-consult" and my father's GP uses "AskMyGP". These systems seem to work well, and there is a record of each ticket. They probably measure response times, which probably shortens them. I have found this invaluable in getting attention from the GP for my father.
 

Chaplin

Registered User
May 24, 2015
100
Bristol
Hello @Islamag
As suggested, I was registered as a Carer for both parents at their GP practice so use askmygp, the online service to request details, prescriptions etc. This was before I had POA in place as dad is deaf and mum has dementia, so neither could use the telephone. Sadly communication between Hospitals and GP’s is notoriously poor at the best of time but think the only way to resolve this now is contact both.
You are both entitled to an assessment of your needs, hope this link is helpful.
 

Tracy51

New member
Nov 9, 2020
5
Glasgow
Hi,

My husband has been diagnosed with mixed dementia, Alzheimer's and Vascular. He first went to see the GP in January this year and it was decided he needed to attend the hospital for tests. The resulting diagnosis we eventually got in a phone call at the beginning of September, after long waits for a scan and phone conversations with the consultant.

However, I have noticed some deterioration over the last few weeks which concerns me. He does not yet have the medication we were told during the diagnosis phone call would be prescribed for him. They were just waiting for the results of his ECG and would then write to the GP with details of the medication to be prescribed. All that was completed by early September but we are still waiting for him to get treatment and now it is almost the end of October.

I know there is no cure but I so desperately hope the medication will slow down the pace of the disease. The whole process has dragged out for so long and I can see he is having more problems as time passes. I know everything is affected by COVID, but we are in a low-risk area and the hospital does not have a lot of people being treated for the virus. It concerns me that it is taking so long from diagnosis to starting medication when we were promised it would be started and all that was required was for a letter from the Consultant to the GP.

That letter has not yet arrived and I am wondering if other people are experiencing the same long delays in the treatment. I realise the NHS is very busy but people like my husband and many many others still need to be treated. Can I ask if anyone else is experiencing such long delays in starting treatment, particularly if you are in a low COVID case area?

We have been through the same process with my mother and with my husband's parents they all developed dementia and we had to cope with all three of them. It was a long and very difficult time in our lives caring for them and then having to contribute to their fees in a care home. It left us emotionally and financially drained. This eventually ending in 2014 when my mother died. I am heartbroken that only six years later we are facing this again ourselves. I know what is ahead of us and I dread it. I am badly disabled with arthritis and have angina, I need to use a wheelchair outside of the house and I have a lot of serious concerns about how I am going to care for him.

I just wish the process of starting treatment was not taking so long, but perhaps I am being unreasonable in my desperation to keep him as well as possible for as long as possible.
My husband was diagnosed with vascular dementia in July. I asked my doctor last week when we could expect post diagnostic support to discover that our GP had not had notice of this.A letter had been sent to them on July 31st but something went wrong. I understand your frustration, covid seems to have paralysed every thing,despite the NHS supposedly being open.
 

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