Changing times

[Grommit]

After Jean's initial diagnosis, 9 years ago, Reminyl was prescribed. Shortly following the build up of the drug in her system she began to experience incontinence problems of both types.

I took the obvious route and called in the District Nurse for advice. Within a couple of days, she called, discussed the problem with me and then arranged a supply of incontinence products to be delivered. All sorted within a week.

She was on Reminyl for around 18 months and then it was decided that it was having no effect and was subsequently withdrawn and replaced with Ebixa which she has been taking twice a day ever since.

The incontinence ceased and we have had only an occasional blip over the last 7 years or so. Each blip lasting perhaps a week or so with the incontinence occurring around twice a week. I decided to stop the supply of incontinence products as, really, they were not needed.

Which brings us to the present day. Her medication has not changed but her incontinence has started again, indicating, I think, a progression of the disease.

No problem - call the District Nurse. It took me three days to find out that they were no longer in the "District" and their local office had been moved 16 miles away.

When I did manage to contact them I was informed, "We do not deal with things like incontinence now and will not come out to discuss your needs. However, we can make you an appointment at our incontinence clinic for sometime in the next few weeks. The clinic is held in our offices (i.e. 16 miles away)"

"But", I said,"I only need a supply of incontinence products. At this stage in Jean's illness, there will be nothing you can do to alter the situation, nothing you can prescribe or advise that will change anything. Can you not just do it over the phone?"

"O No", came the reply, "She will have to be seen and assessed."

"Who will do the assessing?"

Back comes the reply, "One of our District Nurses."

If this were a play, that sentence would be followed by the stage direction:-

Curtain falls slowly on bewildered actor who is not sure whether to laugh or cry.

 

[Soobee]

oh that sounds so unhelpful!

I had similar experiences with mum - I am not sure the incontinence advisors always know that much about dementia.

Once or twice they left incontinence products for me to collect at the doctor's surgery, rather than delivering, and when I made the journey they said "oh we don't have anything for you here, the district nurses see to that and they're not here". I kept on asking and eventually they found a box under a table, they were tutting and sighing about helping to find it. We ended up buying our own pads because the system wasn't working.

Hopefully now they have got mum to wear the bigger pads, she'll be more settled on the delivery system.

 

[Tender Face]

Hello Grommit – forgive me – Jean was obviously diagnosed at a very young age – but I wonder sometimes posts in this section are – “overlooked”? And perhaps as Jean’s disease sadly progresses there may be issues of this more generic nature – irrespective of age of diagnosis or type of dementia - where you might find more responses and help in the ‘main section’? (You might want to ask a moderator to move your post to see if you get any more responses and help in how to get round this particular issue?)

I am so sorry I can offer little in the way of practical advice on this issue (apart from very few ‘blips’ I was aware of at one stage, mum’s repeated incontinence did not manifest until she was already in NH or hospital care and therefore I had no issues of procuring ‘supplies’ to ease the problem).

I am rather curious (curtain closing, member of audience scratching head, puzzled) as to why incontinence requires a clinic assessment? Do they keep them there until there is proof? Do they not believe you need these things for Jean to manage the current situation? Why else would anyone seek out these products? Some ‘black market’???????

Honestly .... my jaw droppeth ..... hope you find a way to get round yet more idiocy in the ‘system’ without traipsing Jean out unnecessarily .....

Love Karen, x

 

[sunny]

I really do sympathise Grommit - rules is rules - this is really what makes caring so very difficult when it is difficult enough already, the umpteen phonecalls, the daft conversations you are forced to have, the traipsing that people with Alzheimers and their carers are expected to do - it is utterly disgraceful.

Do you know it would be easier to get heroin/cocaine delivered to your door by the local pusher (for a sum of course) than to get what you are actually entitled to incontinence products and advice.

 

[Roma]

Usually a District Nurse comes out and does the assessment regarding the size and absorbency needed - and also if night time pads are needed rather than just day time ones.

Roma x

 

[TinaT]

I had to take Ken to a local clinic for assessment. Whilst there I had to teach the district nurse just what Lewy Body Disease is! She had never heard of it!!!!!!!!

As to her deciding on absorbancy etc., etc., I told her what I was buying and that if we were given anything else it would be useless as I had bought all of them one time and another and knew which one worked for Ken's problems.

Within a week of this a regular supply started and still continues even whilst he is in the care home.

Having said this it makes it sound easy which it wasn't! I visited my GP who told me he would refer to the incontinence clinic. I waited months and then visited the clinic myself. They said they would look into this. Three weeks later I went back to the clinic and showed them how upset I was with the whole situation. Within a week I had the long awaited appointment I have just told you about.

Why oh why, when she has a recongnised diagnosis and when you were good enough to save them money by letting them know she had improved and did not need them, do they have to start the whole rigmarole again right from the beginning!!! Patient journey!!! Bah humbug..

xxTinaT

 

[Stewart]

To me, so much of the experience is governed by the individual to whom you are assigned.

Our district nurse is great, she takes a personal interest in my wife and visits every 2 weeks for at least 45 minutes. She has given me her mobile number in case I need her in between. Incontinence products were delivered quickly and in bulk. The district nurse liaises with the incontinence specialist to come up with the best approach.

Now the CPN is a totally different matter!

In my opinion one is good at her job and the other isn't.

Stewart

 

[Grommit]

Things do move fast don't they.

I posted on 19th February about Incontinence Clinic. After 3 further phone calls in which it was denied that I had ever phoned before and, in any case this is not the Department you want to be talking to, I have received a letter with an appointment today.

It is for the 14th April, just about 2 months after my initial contact.

Is this going to be the future for the NHS then?