Can your gp practice help?

[JackyS]

I'm not sure if I am posting this in the right place (so apologies if not) but, apart from caring for my 88 year old Mum (with Alzheimers and vascular dementia) in my real life, I also manage a GP Practice.
We have been thinking for a while that we need to do more to help dementia patients and, in particular, if there is a service our practice nurses could offer (eg health checks, medication checks, carer health checks, reassurance, signposting to other services???)
So, I was wondering if forum members have any views on what services they would really find helpful from their GP Practice (and practice nurses in particular)?
It may be that consultants and social workers cover most things but I know from my own experience that, for example, being able to get a quick water infection test (and medication if UTI found) would be really helpful.
Any thoughts?
PS Obviously this service is aimed at those still living in the community, not care homes.

[littlegem]

Hi, nice to hear someone wants to help.
Better communication would help. I went to hubby's GP as i am struggling with hubby's behaviour, asked for a referral to CPN. Phoned up last night and it had only been sent 5 days ago..... it's nearly 3 weeks since I went to the Doc's!!!!!
I need help NOW or would not have asked for it.

[Dazmum]

When my mum was living with me, we used to be called in together for a regular 'dementia review' which I found very helpful. I'm not sure that this is a standard practice? It could be called something else if people found that worrying, or it made the person they were caring for angry/ sad or defensive. I read so many posts about people refusing to go to the GP that I wondered if there was anything that might help with that.

[JackyS]

Hi, nice to hear someone wants to help.
Better communication would help. I went to hubby's GP as i am struggling with hubby's behaviour, asked for a referral to CPN. Phoned up last night and it had only been sent 5 days ago..... it's nearly 3 weeks since I went to the Doc's!!!!!
I need help NOW or would not have asked for it.

Thanks littlegem - that's exactly the sort of thing we're looking for and need to work on - speed of referrals is a real carer's issue, isn't it? We all do our best for as long as we can but when we cry for help it's because we REALLY NEED HELP NOW!!!

[JackyS]

When my mum was living with me, we used to be called in together for a regular 'dementia review' which I found very helpful. I'm not sure that this is a standard practice? It could be called something else if people found that worrying, or it made the person they were caring for angry/ sad or defensive. I read so many posts about people refusing to go to the GP that I wondered if there was anything that might help with that.

Thanks Jennie - was that with a nurse or GP and what did it include that you found so helpful? No, it isn't standard in every Practice. And yes, we thought a nurse service might help those that don't like coming to see the "doctor".

[Onlyme]

I would love if there was some way for Dr to make family aware of problems with a parent rather than hope the patient tells them. Its only in hindsight that we realise that being told that the Dr had said how good their heart is was, infact, exactly the opposite.

[danny]

Hi Jacky, it would be good if you had a fact sheet with all the local dementia services so that you are a signposting service. There are so many community services evolving and people tend to visit their GPs more than anyone.People really struggle finding information.
Carers health checks really good idea. Med reviews too!!!

[Contrary Mary]

Hi Jacky, it would be good if you had a fact sheet with all the local dementia services so that you are a signposting service. There are so many community services evolving and people tend to visit their GPs more than anyone.People really struggle finding information.

Yes, this was a big issue when Mum was first diagnosed, trying to get information. Our local carers' organisation is now working with health and social care staff so that everyone is up to speed on what is on offer.

And I'll just mention this one. When I had a crisis, the social worker was going to get the GP to refer Mum to the Mental Health service. Fortunately, the crisis abated as, although the referral was done swiftly, it went to the team dealing with the wrong age group!

Good luck

Mary
x

[CollegeGirl]

Like Mary above, I also think easily accessed and offered information is absolutely vital. I felt that my dad was just sent away with a few leaflets when my mam was diagnosed. He knows nothing about social services, benefits, anything like that. Everything seems to have been an uphill battle only made easier by my being able to research on the internet. It shouldn't be like that.

After a loved one's diagnosis, perhaps training courses held at the surgery for carers only, to tell them what's normal behaviour, what might they expect in the future, and how to react in the best way to their loved one's challenging behaviour (or at least suggestions to try). Contact numbers for all the services on offer, support groups, someone to just ask a quick question of when you just need a quick answer - perhaps a buddy scheme?

I do lots of research on the internet on my dad's behalf, and when I tell him that, say, mam's absolute refusal to wash her hair is a very common problem with Alzheimer patients, he was amazed. He just didn't know. He hasn't the time, inclination, energy or resources to find these things out. He's just dealing with them.

A bit of "training" would have helped him enormously, I think.

Just my thoughts! Good luck with the venture, it's heartening to hear that your practice wants to do this, I wish more of them did!

[jeany123]

I agree with contact numbers and email addresses for all available help being supplied ,I spent many frustrating hours on the net and in the phone book looking for numbers which are so difficult to find,you would think it would be so easy but it isn't, especially if you are stressed in the first place .

[Loopiloo]

Like Mary above, I also think easily accessed and offered information is absolutely vital. I felt that my dad was just sent away with a few leaflets when my mam was diagnosed. He knows nothing about social services, benefits, anything like that.

Just my thoughts! Good luck with the venture, it's heartening to hear that your practice wants to do this, I wish more of them did!

When our GP eventually referred my husband to the memory clinic, after his diagnosis of vascular dementia the doctor there told us to go away and prepare ourselves, and learn as much as we could about dementia.

We had been told by the diabetic nurse and the GP "they will help you"... There appeared to be no help or advice available after a dementia diagnosis, no starting point, which added to the feeling of isolation as the dementia progressed.

We just carried on as we had done for some years, until a crisis situation suddenly arose almost four years later.

I learned about dementia from researching online. This was some years before I found TP which became a wealth of information for me. I asked questions and the responses were instant.

But what about people who do not have computers, who have no family to access online information for them....

Had practical information, and the other things suggested by others on this thread, been available from our GP or practice nurse, or someone in our health centre, it would have been a great help.

A year after my husband's diagnosis his GP called us in for an "annual review" of my husband's dementia, but it never happened again.

It takes time to organise and set up sources of information etc., but a good starting point would be as Danny suggested. A fact sheet with all the local dementia services.
Loo

[MargaretB]

This thread has really hit a chord with me! A piece of paper listing all the local Dementia help available, where they are, what they do, and with contact numbers should be mandatory in all GP's surgeries. When my husband was first diagnosed we were inundated with people from here, there and everywhere, so much so that I lost track of who did what. If we had something to refer to it would save hours of time and endless frustration at a time when you are already stressed nearly to breaking point. Today, three years on and going downhill rapidly I have spent over two hours trying to find someone I could borrow a Tri-walker from for a few days to see if Hubby can manage it. He has a stick, which he carries about with him, it never touches the floor and is abandoned all over the house, we tried a Zimmer frame he walked round with it held as a battering ram. I was passed from one set of people to another.......it turned out the Community nurse was who I wanted...........DUH!
Margaret

[dots]

Years before my husbands dementia became obvious to anyone he went to the Dr. because he was worried about his memory. The Dr. said to come back in 6 months if he was still worried and that he felt it was stress. Now with the wisdom of hindsight I realise that was the window he could have been helped in, 6 months later the illness had progressed and he wouldn't go back. Surely when a seemingly competant man in his mid fifties and not a doctor botherer should set off some sort of alarm and some further help could be advised.

[JackyS]

Thank you to everyone who has taken the time to respond. As a carer myself, I recognise the need for clearer info (especially in the early stages) and you're right, the GP surgery is the obvious place to go for this as we already signpost in so many areas.

We'll definitely be trying to set something up in our local area, working with the Borough Council and local charities (and I'll let you know how we get on) - but in the meantime, if anyone else has further areas to add to this thread, please do so. There's still so much we all have to learn about dementia - and how best to care for the sufferer (and their family/friends) as it progresses - and this GP Practice is eager to ensure we offer the services our patients need.

[Contrary Mary]

and this GP Practice is eager to ensure we offer the services our patients need.

Music to our ears, we'll all be moving to Cheshire