Help from the GP

[oilovlam]

I'm a little worried that I'm not getting much support from the GP surgery for my mother.

She has broken both hips in the last 8 months after falling with UTI (& Urosepsis...is that UTI?). I can sometimes see that mum is acting strange....angry, unsteady on her feet etc...but the GP's don't seem too interested. So that makes me ignore the symptoms and so she falls. It's like a slow motion car crash.

I learned recently that the GP surgery has 'proactice care team' and mum is on their list....but I have no contact with them. I was told today that being on the list means that mum is discussed 'regularly', and I guess they assume that I'm on top of things, so I presume they say 'No action required'.

What sort of support do people get from their GP. Do they have a 'proactive' team and what do they actually do ('proactive' is the wrong name for them IMO....I suspect that it is a requirement of NHS to have a 'proactive' list of vulnerable patients....but resources being finite I guess it's just a tick-box exercise).

Mum is advanced stage dementia. She eats & drinks OK (with support) but swallowing may be an issue in the future. Risk of falling is an inevitable part of dementia but I cannot see the GP is trying to reduce that risk....I feel I'm on my own sometimes.

When I started on this journey as a carer I went on a course where they described all the healthcare professionals who will support you (District nurses, GP, OT, etc etc). If I knew then what I know now I would have laughed out loud and told them they were talking rubbish. Austerity probably hasn't helped.

 

[AlsoConfused]

I think you need to take the initiative in building a more supportive relationship - because I doubt whether the GP surgery will, they're too busy and often under-staffed.

Mum is advanced stage dementia. She eats & drinks OK (with support) but swallowing may be an issue in the future. Risk of falling is an inevitable part of dementia but I cannot see the GP is trying to reduce that risk

Why not email the surgery with a snapshot of your Mum's state at the present; list what you see as the main risks to her going forward; explain what help you need from them to protect her from these risks and / or the harm caused by her disease; and ask for an appointment with the GP to plan how they and you can best support your Mum?

Our experience was that the GP surgery was excellent at helping Mum and us.

One of the things that helped was that Mum had made an advanced directive (only verbally) that the doctors and nurses could discuss her health problems with the family.

Dad hadn't made such an arrangement initially so it was very difficult for us to talk to the GP about his health needs. I got over such problems by saying "I know you can't talk to me about Dad because of patient confidentiality but it's OK for me to explain my worries about Dad to you. This is what is happening ...."

 

[DMac]

I used to write to my FIL's GP to explain the situation before an appointment. They did not accept e-mails, so this was my only method of communicating with them. They would not respond directly to me because of patient confidentiality; I did not have health PoA for him. It worked insofar as it 'set the scene' for an appointment, and the GP was put in the picture beforehand. I could tell that they had taken account of what I'd written.

I also built up quite a good relationship with the receptionists and admin people at the practice - they would help with chasing down paperwork etc.

 

[Kevinl]

What do you want the GP to do?.
They have diagnosed her and/or sent her to a memory clinic where no doubt she'll be given any medication and treatment she needs.
If she's a fall risk the possibly the local Social Services OT could do an assessment and fit some handrails, anti slip mats, ramps and things so the GP could refer het to them but you could do that yourself anyway.
Unlike most diseases there is no real on going treatment for AZ, it is as you say "like a slow motion car crash" but an unpreventable one. Were it something treatable or terminal then the NHS can be very good.
When I sat down and analysed it I knew the health services could do nothing and that what I wanted (and this is me not you) was that someone acknowledged the situation, my wife was getting worse everyday from a brain condition, I was having to cope with aggression, incontinence and all the rest 24/7 and the NHS thought the best thing to do was to leave someone who knows nothing about AZ to cope at home, alone, despite all the doctors, nurses, ambulances, hospitals, machines that go beep and all the rest the best they had to offer was me looking after her, at home in a 3 bed semi.
K

 

[Beate]

It would be nice if GPs were proactive, but I guess they're too busy for that.

So if she falls a lot, get a referral to the Falls Clinic.
If she has trouble swallowing, get a referral to the SALT team.

If anything is wrong, talk to them, but it's not helpful to blame them for you ignoring some symptoms, causing your Mum to fall. Instead get the experts involved.

We have very good input from physio, OT, District Nurses and various other community health services like Foot Health and the Continence Service, but we had to ask for it.

 

[Marnie63]

If you have a half decent GP at your surgery, why not make an appointment to have a chat and raise any current issues or concerns? I have found that when surgery staff have been involved, they have been very good. As others have said, they probably don't have the resources to cover everything, so do ask them for help and advice if you need it. Mum and I have the same GP and he is happy to see me alone to discuss any issues around mum. I think the next time I will put our GP and the surgery to the test will be if/when mum deteriorates to the point that I need more medical support at home. I have already asked the GP about such services, should mum still be at home with me if/when she's at a more advanced stage, and his words were something like "if we can't support you at that time, then we will have failed". Only words of course, but based on experience so far, I'm hopeful that I'll get support in the future as well.

 

[Aisling]

I'm a little worried that I'm not getting much support from the GP surgery for my mother.

She has broken both hips in the last 8 months after falling with UTI (& Urosepsis...is that UTI?). I can sometimes see that mum is acting strange....angry, unsteady on her feet etc...but the GP's don't seem too interested. So that makes me ignore the symptoms and so she falls. It's like a slow motion car crash.

I learned recently that the GP surgery has 'proactice care team' and mum is on their list....but I have no contact with them. I was told today that being on the list means that mum is discussed 'regularly', and I guess they assume that I'm on top of things, so I presume they say 'No action required'.

What sort of support do people get from their GP. Do they have a 'proactive' team and what do they actually do ('proactive' is the wrong name for them IMO....I suspect that it is a requirement of NHS to have a 'proactive' list of vulnerable patients....but resources being finite I guess it's just a tick-box exercise).

Mum is advanced stage dementia. She eats & drinks OK (with support) but swallowing may be an issue in the future. Risk of falling is an inevitable part of dementia but I cannot see the GP is trying to reduce that risk....I feel I'm on my own sometimes.

When I started on this journey as a carer I went on a course where they described all the healthcare professionals who will support you (District nurses, GP, OT, etc etc). If I knew then what I know now I would have laughed out loud and told them they were talking rubbish. Austerity probably hasn't helped.

When my late husband was diagnosed with Alyzheimers, I was promised so much support etc...... Didn't happen. We had an excellent GP.

Contact the " proactive team" and tell them you are not on top of things and your Mum needs support.

Aisling xx

 

[Rosettastone57]

I'm afraid as other posters have said sometimes you have to be a bit more proactive in obtaining health care professional help .My mother-in-law has mixed dementia but I have found that the best way of contacting the GP is via a letter .Our surgery has a Rapid Response Team who came out about three years ago after my mother-in-law had a fall and I found that response excellent that particular time was before she was actually diagnosed with dementia. Since the diagnosis however both my husband and I have found the GP to be very supportive and proactive. Since obtaining lasting power of attorney for health and welfare which I have submitted a copy of to the surgery, I have found that the GP has telephoned me to discuss my concerns although I appreciate that patient confidentiality is important. I was informed by the surgery that my mother-in-law was going to be referred to the continence clinic after I put a written note in expressing my concerns about her continence issues .Obviously the GP didn't actually have to inform me but I was pleased that I had been considered.

I have also found that if the carer informs me of some issues with my mother-in-law and if they phone the surgery then this reinforces the message that professionals are concerned and the care is obviously have a duty of care to their client

I have never been fobbed off by the surgery or the GP who are clearly over worked. In our area persons with dementia are often referred to the community matron although this hasn't been the case with my mother-in-law

 

[oilovlam]

What do you want the GP to do?.
They have diagnosed her and/or sent her to a memory clinic where no doubt she'll be given any medication and treatment she needs.
If she's a fall risk the possibly the local Social Services OT could do an assessment and fit some handrails, anti slip mats, ramps and things so the GP could refer het to them but you could do that yourself anyway.
Unlike most diseases there is no real on going treatment for AZ, it is as you say "like a slow motion car crash" but an unpreventable one. Were it something treatable or terminal then the NHS can be very good.
When I sat down and analysed it I knew the health services could do nothing and that what I wanted (and this is me not you) was that someone acknowledged the situation, my wife was getting worse everyday from a brain condition, I was having to cope with aggression, incontinence and all the rest 24/7 and the NHS thought the best thing to do was to leave someone who knows nothing about AZ to cope at home, alone, despite all the doctors, nurses, ambulances, hospitals, machines that go beep and all the rest the best they had to offer was me looking after her, at home in a 3 bed semi.
K

KevinL, I know I should 'man up'....I'm on my own against this disease I know....but tackling UTI's has me beaten.

All I really want is someone to contact (not a GP because they're too busy)...so I thought a 'proactive' nurse would be ideal. Someone to chat to 'off the record' to discuss options and give advice. Someone who could perhaps advise me when to escalate my concerns or just put it down to natural progression of the disease. At one time I thought 'Old people Mental Health' would provide that support but they waved goodbye to us when the drugs stopped having any affect (just when I needed them actually).

It sounds like you've been through this process before and that UTI's & falls are inevitable. I was hoping that prevention was better than cure. But it seems that the NHS almost prefers to repair a broken hip than tackle UTI's.

 

[oilovlam]

One of the things that helped was that Mum had made an advanced directive (only verbally) that the doctors and nurses could discuss her health problems with the family.

Dad hadn't made such an arrangement initially so it was very difficult for us to talk to the GP about his health needs. I got over such problems by saying "I know you can't talk to me about Dad because of patient confidentiality but it's OK for me to explain my worries about Dad to you. This is what is happening ...."

AlsoConfused, don't have 'Health' LPA but hasn't been an issue with the NHS. I'm mums registered carer and I deal with all her medical matters. Confidentiality hasn't been an issue. They either deal with me or nothing gets done. Mum cannot respond meaningfully any longer.

I'm probably trying to do the impossible....prevent her from falling. I can see it's going to happen and I'd like to find a way to reduce the risk.

Perhaps this is part of the journey...she will continue to fall and injure herself until she eventually becomes bedbound...at which point falls will no longer be an issue. There's some sort of crazy logic there.

 

[cragmaid]

I got wise to Mum's symptoms and used to ring the GP and ask for a home visit that day as I thought Mum had a UTI...... result usually no visit but - could I drop in a sample and pick up an antibiotic script at the same time? This worked extremely well on Fridays before Bank Holidays. I never abused the system, I just could read Mum like a book.

Do you have a H&W POA and is it registered with the practice? I suggest that you ring and ask for either a face to face appointment regarding Mum's decline or a telephone appointment to discuss the Falls Cinic, The SALT Team , the Incontinence team if nec, and take it from there.

But remember you can ask for a home visit, and if they ask is it an emergency, say yes.

 

[oilovlam]

When my late husband was diagnosed with Alyzheimers, I was promised so much support etc...... Didn't happen. We had an excellent GP.

Contact the " proactive team" and tell them you are not on top of things and your Mum needs support.

Aisling xx

Aisling, I've been trying to contact the 'proactive team' but it's like a secret organisation. Mum's on their list (has been for about 8 months or more I believe...only found out recently) but I haven't seen any benefit. They have these regular meetings (strange handshakes & chanting no doubt)....I'm trying to break down the omerta.....Dan Brown's next book is about the secretive 'proactive teams'.

 

[oilovlam]

I got wise to Mum's symptoms and used to ring the GP and ask for a home visit that day as I thought Mum had a UTI...... result usually no visit but - could I drop in a sample and pick up an antibiotic script at the same time? This worked extremely well on Fridays before Bank Holidays. I never abused the system, I just could read Mum like a book.

Do you have a H&W POA and is it registered with the practice? I suggest that you ring and ask for either a face to face appointment regarding Mum's decline or a telephone appointment to discuss the Falls Cinic, The SALT Team , the Incontinence team if nec, and take it from there.

But remember you can ask for a home visit, and if they ask is it an emergency, say yes.

Cragmaid, I don't have 'Health' POA but GP's & hospital doctors consult me (I'm her carer). Obviously I cannot make medical decisions for her but I make make suggestions and they seem to be included in the final decision.

Falls clinic is probably not needed. The greatest risk of fall seems to be when she has a UTI (two broken hips, both times with some sort of UTI).....that's when the GP's should be saying "How do we spot UTI's earlier and possibly prevent a fall".

SALT team....I guess when she starts choking whilst eating or drinking I would ask for a SALT referral (I saw Holby City and they mentioned it for someone with MS). Again having a nurse to chat with would be helpful in that scenario.

Incontinence team - yes mum has been using pads for several years now. New Tena pads are much better then the previous brand they supplied.

The GP's are very good with home visits. But they are very reluctant to give antibiotics for 'suspected' UTI's..."Is she peeing blood?".....if she was then they would consider medication.

 

[cragmaid]

"Is she peeing blood?".....if she was then they would consider medication.

That's one time where it could pay to say, "I'm not sure she might be.... she wears incontinence pads. But I think she mentioned it hurt to pee".

Sadly though, the falls and the UTIs might be coincidental, rather than cause and effect.

 

[Kevinl]

KevinL, I know I should 'man up'....I'm on my own against this disease I know....but tackling UTI's has me beaten.

You don't have to "man up" to anything, in fact I resent the phrase.
UTI's are down to poor hygiene, you mention a brand of pads which are a brand leader so I'm sure are good but unless they're used with a suitable wipe and used properly.
After 2 two years in pads my wife has only had one UTI but that's down to the care she gets. Personally I blame God for putting the ignition so near the exhaust
K

 

[oilovlam]

Sadly though, the falls and the UTIs might be coincidental, rather than cause and effect.

Cragmaid, huh? Both times she fell and broke her hip she had a UTI?...a coincidence.

I think most people who have experienced a UTI say that it can knock you for six. I think if someone with dementia has a UTI then they are at increased risk of falling.

 

[oilovlam]

You don't have to "man up" to anything, in fact I resent the phrase.
UTI's are down to poor hygiene, you mention a brand of pads which are a brand leader so I'm sure are good but unless they're used with a suitable wipe and used properly.
After 2 two years in pads my wife has only had one UTI but that's down to the care she gets. Personally I blame God for putting the ignition so near the exhaust
K

Kevinl, I don't think it is necessarily a matter of poor hygiene....some people are more prone to UTI's than others. Apparently constipation can make someone more at risk of UTI....so I'm feeding mum with laxatives....which causes massive sloppy poohs....which are a devil to clean hygienically with wet wipes.

 

[Linbrusco]

My Mum has a combination of a pelvic/bladder disorder attributed to childbirth & menopause? plus chronic Lymphocytic Leukemia so low resistance to bugs. She would get a UTI once or twice a year but with her Alzheimers every summer she would develop them more frequently. Drinking enough fluids was a real problem. Mum had 4 UTI's in 6 mnths prior to going into care. None for 8 mnths and then 2 UTI's between March & April which have definitely knocked her for 6. She needs more fluids than most and the carers find it a continuous struggle.

 

[oilovlam]

My Mum has a combination of a pelvic/bladder disorder attributed to childbirth & menopause? plus chronic Lymphocytic Leukemia so low resistance to bugs. She would get a UTI once or twice a year but with her Alzheimers every summer she would develop them more frequently. Drinking enough fluids was a real problem. Mum had 4 UTI's in 6 mnths prior to going into care. None for 8 mnths and then 2 UTI's between March & April which have definitely knocked her for 6. She needs more fluids than most and the carers find it a continuous struggle.

Drinking plenty seems to be important for avoiding UTI's....something that is difficult for people like my mum who take bird sips & need to be given the fluid.

 

[doodle1]

Have you thought of giving her some cystopurin?it is an over the counter remedy for cystitis but I have found that if I think mum is cooking a UTI then I follow the instructions on the packet( it's a powder) and give it to her for a couple of days. Maybe worth a go if you have reluctant GP re antibiotics.