GP Reviews

[maisiecat]

Hi @Violet Jane , your post is spot on and most of us know that magically dementia of any type has been recategorised not as a medical condition but as a social care problem.
Hosptial is disastrous and I witnessed not just my husband's decline but everyone patient that came into the dementia bay over 3 months. Nobody who was admitted went out in an improved condition most died or went into Nursing homes.
Despite alzheimer's forget me nots being plastered everywhere it was obvious that most of the staff loathed their patients and no they weren't shortstaffed. 2 would be looking after 6 patients.

 

[BuspassBill]

I think that there needs to be a comprehensive review of NHS services for patients with, or suspecting of having, dementia. Dementia is a growing problem and the NHS can't ignore it or pay lip service to it any more. Underpinning the poor services are several major problems (there are probably more):
(1) the attitude that nothing can be done as it's a progressive disease and so why bother with these patients;
(2) the failure to use medication appropriately to relieve distressing symptoms;
(3) the practice of treating dementia as a matter for social care once a diagnosis has been made;
(4) unacceptable delays in diagnosis and poor diagnostic practices;
(5) the practice of treating the patient as if s/he is cognitively well and can give an accurate account of what's going on;
(6) the conflict that arises between the needs and wishes of the patient and the needs and wishes of the carer who, in many if not most cases, is effectively trapped;
(7) outdated ideas about family structures and lives; and
(8) appalling care for patients when they are in hospital.

You’ve summarised everything so well. Dementia is talked about so much more now, surely something will be done to improve services! A Dementia Specialist Consultant run service would be an amazing start.

 

[Rishile]

@Rishile, to be fair, things only really improved after your husband was sectioned and got the correct medication and so the experts in the hospital did help you and your husband. Your case demonstrates that there are some medical solutions and that these should be offered as soon as they are needed. Many carers aren't even aware that there is helpful medication and only find out about it when things have reached a crisis point. Whether this is to do with lack of interest, wilful blindness, a belief that people with dementia shouldn't be medicated or a low priority being given to carers I don't know.

Too many people, including medical professionals, think that dementia is all about memory loss. They aren't aware that loss of functionality, personality changes, aggression, paranoia and delusions are common with all types of dementia and not just the less common ones.

@Violet Jane - yes, I agree with you that we did finally receive the right help and I can't fault the dementia unit but I went through six months of hell before I reached that stage. This was due to 'experts' who didn't understand me, my husband or our situation. At one point, when he was in the Care Home, a member of the DISS team arrived but before he met my husband (having never met him before) asked me if I thought my husband should be on anti-depressants. How on earth should I know? I found the local DISS team to be a complete waste of time from beginning to end.

When my husband was sectioned, I was terrified as nobody explained what that meant and I had totally lost trust in everyone. However, the staff had a lot of experience with dementia patients and spent hours assessing and talking to my husband to get to know him and find out what he (and I) wanted. They gave me every assistance to allow me to take him home with confidence and in safety. I was told by one of the senior staff that it was because they had a lot of funding so were able to provide this level of care but not every area has this.

I also agree that a lot of people think dementia means 'memory loss'. They think it just involves losing recent memories like what they had for dinner. They have no idea that basic skills are lost like using cutlery, using the TV remote, using the phone, washing up (Aaaaarrrgggh), washing themselves, what product is to be used for which job, driving, making decisions, losing track of time etc. All of these things make life very difficult for the carer. As you say, all the other problems that are never mentioned are on top of all of this. In some ways, I blame the media. I often read articles about dementia and the only thing ever mentioned is the memory loss.

 

[windyhill]

Unfortunately most dementia sufferers can turn on “show timing” when it suits them. I can have a day of purgatory with my wife experiencing delusions, hallucinations, paranoia, extreme mood swings resulting in severe arguments, then when the phone rings my wife talks to someone on the phone (normally family) and you would think she had just spent a day relaxing on a sunny beach sipping cocktails. The person on the other end of the phone would have a hard time working out that my wife had serious dementia problems and has been exhibiting them all day. She sounds normal and light hearted. My family are not fooled since they have also experienced the bad days as well. However I am sure the average medical worker, particularly doctors, are not clued in to the fine details of what behaviours dementia brings about and particularly what show timing is all about. Most doctors don’t seem to be well trained in mental health and will pass on the problem to someone else (like the local social care unit) when they can. In my short experience dementia care by the NHS is about 60 years behind the times and doesn’t look likely to improve any time soon.

 

[Blissy]

My OH has vascular dementia but has medication for anxiety and blood pressure, the review was inadequate for us but ticked lots

What’s a dementia review?

Seriously this seems to be unique to folks with Alzheimer’s with a focus mostly about prescriptions and adjustments to dosage etc

No specific meds for Vascular Dementia so no reviews

Or is it just us ?

My husband has mixed dementia and isn't on any medication for this. He had separate review for the other medication he is on. The paperwork I have for this review says My Dementia Car Plan.

 

[Blissy]

My husband has mixed dementia and isn't on any medication for this. He had separate review for the other medication he is on. The paperwork I have for this review says My Dementia Car Plan.

Care not car!

 

[Ellie2018]

I must be very lucky as our GP is fab, we have an annual Alzheimer’s review and I go in first, saying I’m the first appointment then we go through everything and the nurse calls OH and does the blood tests etc for general review. I refuse to sit in front of him, being asked questions he can’t remember the answer to and then sitting listening to me saying, yes he does get aggressive, no he can’t change a light bulb …….on top of everything else, there is no dignity with this disease. Luckily our practice gets it and agrees. I have had lots of help with medication for the symptoms too.

 

[Cerisy]

First time at our GP surgery with my wife talking about her dementia. He tried to get her to agree to an appointment with the Nurologist, looking at her and saying “how do you feel about that”. Totally daft - she couldn’t understand or accept she needed to have such an appointment. She sort of nodded and then lost it with me when we left the surgery. Not trying that again - stressing her out is just not worth it. I know she has dementia and is detoriating - all the nurologist will do is confirm that. We are in northern France so the principal French memory tests aren’t appropriate - we’ve done an English version of the mini-memory state exam and she managed 19/30 which surprised me, but the changes are coming quicker.
As we know, all PWD progress at different rates and with different symptoms. My wife is happy with our routine and I’m coping at present so no more medical involvement for now. It’s quite a difficult moral situation isn’t it. My wife has had 2 different cancers and has said in the past she wouldn’t ever want chemo if the last cancer - breast cancer - returned. I would not wish to put her through more hospital time. This long goodbye needs to run it’s course with her, keeping her comfortable and safe. So so sad.

 

[Lawson58]

Here in Oz, our Treasurer has announced that there will need to be changes made to be able to fund aged care in the future. He pointed out that in the next few years there will be TRIPLE the number of people over the age of 80 and that our government needs to prepare for that. Younger people are having fewer babies so like many countries we are going to be top heavy with an aging population and fewer people working and paying taxes.

This has sparked quite a lot of controversy because he has suggested that wealthy people should contribute more so that lower income people can get the care that they need. As you can guess, it is not a popular idea among a certain section of the community.

 

[DeeCee7]

Oh @Violet Jane I agree with every single word you have said. I have said things like this many, many times. Another issue is that when the carer is at crisis point, there is NO help. In fact, when I reached crisis point, things just got worse and worse. I had a massive list of phone numbers given to me by all of the 'experts' and most were unobtainable, others I held on for over an hour only to be told 'there is nobody available to take your call - please try later'. How much use is this when it is 6.00am on Christmas Eve, you have a PWD yelling and screaming, threatening violence, wanting you out of the house (because he thought I was an intruder) when all you really need is someone to say 'try saying this' or 'let me speak to them and I'll try to calm them down'.

The only thing that kept changing for me was the phone number list got longer and longer. Long-term, things have now improved because all the 'experts' have gone away and left me alone.

Dementia is a HUGE problem waiting to explode. The government and NHS seems totally unaware of the problem. Most people I speak to have a spouse, parent or parent-in-law that has dementia and most are full-time carers for that person. I have even been in a queue at the coffee shop and got into conversations with people that are full-time carers.

Another point - at my husband's dementia review with the GP, the doctor asked me what I was doing that was so successful as his mother has dementia and he wanted to know if I could suggest anything to help her.

Gosh, I so agree. (I touched the Report button in error when scrolling, sorry!)

 

[jay6]

I totally agree with you @Violet Jane and others here.
I've found doctors a complete waste of time along with the many so called 'professionals'. I had 10 years after husbands really bad stroke and several small ones of 'Oh it's his stroke' every time I tried for help with issues. Even trying to get a diagnosis of dementia it was 'Oh it's just his stroke'. Everything was blamed on his stroke as if it was some sort of get out clause. Now he's been finally diagnosed with dementia, I'm getting 'Oh it's his dementia' 'Its THE dementia'.
Last week I tried to get through to the surgery for his leg. I could see it was becoming ulcerated. It had started weeping, but all I got was 'send us a photo' I asked to see a doctor but they referred him to the district nurse to attend, who cleaned and dressed it.
Two days later, (yesterday) his leg had soaked the plasters, his socks and tissues I had placed between the paster and socks, was red, swollen, very painful and hard to put pressure on to walk. So I contacted the nurse again as doctor obviously a waste of time. It's now bandaged from ankle to knee, he is struggling to walk and in a lot of pain. He's been told to take paracetamol and call them back if it soaks the bandage before their next visit which is tomorrow.
He had some antibiotics left over from last year so has decided to self medicate with those. Which does seem to have reduced the swelling, but with sepsis etc. you would think someone would take a swob to test!
I'm sure the attitude of doctors is 'It's dementia' just leave them to it. Not worth the time!
As careers we are just left to deal with it all as if it's just all part of our job. No one ever gives a s**t about us until we get to breaking point. Even then they aren't interested.

 

[jennifer1967]

I totally agree with you @Violet Jane and others here.
I've found doctors a complete waste of time along with the many so called 'professionals'. I had 10 years after husbands really bad stroke and several small ones of 'Oh it's his stroke' every time I tried for help with issues. Even trying to get a diagnosis of dementia it was 'Oh it's just his stroke'. Everything was blamed on his stroke as if it was some sort of get out clause. Now he's been finally diagnosed with dementia, I'm getting 'Oh it's his dementia' 'Its THE dementia'.
Last week I tried to get through to the surgery for his leg. I could see it was becoming ulcerated. It had started weeping, but all I got was 'send us a photo' I asked to see a doctor but they referred him to the district nurse to attend, who cleaned and dressed it.
Two days later, (yesterday) his leg had soaked the plasters, his socks and tissues I had placed between the paster and socks, was red, swollen, very painful and hard to put pressure on to walk. So I contacted the nurse again as doctor obviously a waste of time. It's now bandaged from ankle to knee, he is struggling to walk and in a lot of pain. He's been told to take paracetamol and call them back if it soaks the bandage before their next visit which is tomorrow.
He had some antibiotics left over from last year so has decided to self medicate with those. Which does seem to have reduced the swelling, but with sepsis etc. you would think someone would take a swob to test!
I'm sure the attitude of doctors is 'It's dementia' just leave them to it. Not worth the time!
As careers we are just left to deal with it all as if it's just all part of our job. No one ever gives a s**t about us until we get to breaking point. Even then they aren't interested.

be careful with expiry dates on old medicine.

 

[sdmhred]

I totally agree with you @Violet Jane and others here.
I've found doctors a complete waste of time along with the many so called 'professionals'. I had 10 years after husbands really bad stroke and several small ones of 'Oh it's his stroke' every time I tried for help with issues. Even trying to get a diagnosis of dementia it was 'Oh it's just his stroke'. Everything was blamed on his stroke as if it was some sort of get out clause. Now he's been finally diagnosed with dementia, I'm getting 'Oh it's his dementia' 'Its THE dementia'.
Last week I tried to get through to the surgery for his leg. I could see it was becoming ulcerated. It had started weeping, but all I got was 'send us a photo' I asked to see a doctor but they referred him to the district nurse to attend, who cleaned and dressed it.
Two days later, (yesterday) his leg had soaked the plasters, his socks and tissues I had placed between the paster and socks, was red, swollen, very painful and hard to put pressure on to walk. So I contacted the nurse again as doctor obviously a waste of time. It's now bandaged from ankle to knee, he is struggling to walk and in a lot of pain. He's been told to take paracetamol and call them back if it soaks the bandage before their next visit which is tomorrow.
He had some antibiotics left over from last year so has decided to self medicate with those. Which does seem to have reduced the swelling, but with sepsis etc. you would think someone would take a swob to test!
I'm sure the attitude of doctors is 'It's dementia' just leave them to it. Not worth the time!
As careers we are just left to deal with it all as if it's just all part of our job. No one ever gives a s**t about us until we get to breaking point. Even then they aren't interested.

This is awful! i would wait until after 6pm and phone 111 saying u r concerned about cellulitis. You may find an OOH GP is more willing to come out - I’ve had good service with them in the past.

 

[Violet Jane]

I must say, I don't think that the surgery / district nurse are taking your husband's problem with his leg seriously. I'm surprised that the nurse hasn't at the very least taken a swab and prescribed some antibiotics.

 

[Lawson58]

I have to have an exercise ECG later in April. My GP works at the hospital conducting these tests two days a week and has arranged that when I go in to do it, he will be the one supervising it. I didn’t even have to take the referral in because he took it in with him. How nice is that?

 

[jay6]

be careful with expiry dates on old medicine.

I did check that Jenny, they are still in date until end of this year, but thanks for the reminder

 

[jay6]

This is awful! i would wait until after 6pm and phone 111 saying u r concerned about cellulitis. You may find an OOH GP is more willing to come out - I’ve had good service with them in the past.

I've just called 111 as had been trying to get through to doctors since 8.30 this morning. Every time I've phone there is a recorded message saying too many waiting so call back. This is what it was like last week. Took me about 4 days to finally get through. When you eventually get through you can ask for a call back but they never give you enough time to answer, even when I've had my mobile next to me. Now waiting clinician at 111 to call back

@Violet Jane Totally agree Violet as I say the attitude is 'well he's got dementia, so why bother'

@Lawson58 Pity they aren't all like yours

 

[jay6]

@sdmhred Took your advice and called 111 they got the GP to contact me and we actually got an appointment.
However, the G.P. didn't look at it properly (removed part bandage but not the plaster covering the ulcer) said it wasn't infected but suspected a D.V.T. and referred us to the hospital with a letter.
So off we went to A. & E. Knowing how long you wait around in A & E even with a doctors letter we were prepared, so took drinks etc.
After an hour waiting to be triaged. The nurse took bandages off, the padded plaster (about 8" square) fell off and the stench was awful. Both the nurse and I heaved with the smell. She immediately said it was infected and also had Cellulitis. She said it was unlikely to be D.V.T. as he was on blood thinners but still check with bloods. So much for the G.P. and district nurses.
To cut a long story short he has now been admitted to hospital, having to have strong antibiotics injected. Hospital said it had actually been good taking his old antibiotics even though not recommended as it had slowed things down. Blood test showed no sign of D.V.T. but has infection, cellulitis and possible problem with kidney. So they are doing more tests and keeping him in.
So much for G.P.'s Took over a week to get through, ring back never gave enough time to pick up the phone. Eventually when I did managed to speak to someone, they only wanted photos, and passed him on to district nurses to just dress the ulcer.
No wonder careers get so stressed!!!!!!!!!!!!!!!!

 

[sdmhred]

Oh @jay6

Im glad your OH is now getting treatment but how awful that it took a carer wih similar issues going on to suspect what it was ….and a GP who completely got it wrong.

I would write and complain about that GP visit where he didn’t look. Shocking!

I do hope the strong antibiotics sort things quickly for him.

 

[jay6]

Oh @jay6

Im glad your OH is now getting treatment but how awful that it took a carer wih similar issues going on to suspect what it was ….and a GP who completely got it wrong.

I would write and complain about that GP visit where he didn’t look. Shocking!

I do hope the strong antibiotics sort things quickly for him.

I've complained so many times in the last 10 years (since stroke) at the way he has been treated various times.
I know how stressed he is now as going back to hospital is his worse nightmare. He's had DNR issued without knowledge to being left sat in a chair with nappy and no trousers and told he couldn't walk about. Many in N.H.S. are great, but there are some I really question why they are in the health care at all.