help please or advice

[mazzer]

My lovely mum has been diagnosed with Early stages dimentia - Alzheimers, having had scans and seen doctors she has had varying scores in the tests they give from 22 to 26 on a good day Her Consultant says she cannot prescribe any medicine, because of the NICE guidlines, but she did add when pushed that in her oppinion mum could benefit from medication. Now I feel like a yo yo. We are even prepared to pay for her to benefit from medication, but how on earth do you find a private consultant to whom we can take her. We want to do the best we can, she is wonderful and at 82 was still teaching a keep fit class until she broke her wrist this year. I keep hitting brick walls ??

mazzer

 

[Grannie G]

Hello mazzer, welcome to TP.

I`m so sorry about your mother, especially as she has been so active until she broke her wrist. It`s strange how an accident can bring out a condition you had no idea was there.

If the consultant did admit your mother might benefit from one of the Alzheimer drugs, Aricept or Reminyl, perhaps her GP can point you in the right direction to enable you to buy this medication privately.

I hope you are aware it is not successful for everyone. My husband had severe side effects from both drugs. However, I do believe if side effects are to happen, they happen quickly, and many people have had the quality of their lives extended considerably.

But really, you mustn`t take my word, you`d be far better discussing this with a medic, and see what advice you receive.

Please let us know how you get on.

Take care

 

[mazzer]

Thank you Sylvia, It is so good to talk with people who understand the problems we all seem to have in one way or another. Unfortunately My GP seems very reluctant to help by suggesting a way to purchasing the medication privately - I perhaps must try another doctor in the practice. I am determined to do the best I can for her - somehow......

After seeing my aunt die slowly over ten years or so with similar problems I just.....well I just have the horrors seeing Mum like this.....
Thank you again.

Mazzer

 

[Grannie G]

mazzer, do you and your mother have the same GPs? If not, perhaps you could approach your mother`s GP.

 

[jenniferpa]

Hi mazzer and welcome from me as well.

Another avenue you might explore is to ask the consultant if she knows anyone to accepts private patients. The problem you are going to experience is that while there is no overall legal reasons why the consultant shouldn't give a a private prescription, many consultants practice through hospitals that a) require a private consultation before a private prescription is provided and b) don't allow patients who have been seen via the NHS to become private patients, so you're in a catch 22 situation. This is an over simplification of the situation, but the logistics of ensuring that an accusation can't be made that a NHS patient has been "poached" by the private sector means that many doctors are unwilling to get caught up in this web and so have a policy of blanket refusal.

Something to bear in mind is that theoretically, all follow up may have to be done privately, so it's not just the cost of the drugs, but also the ongoing cost for consultations you have to consider.

Best wishes

 

[Canadian Joanne]

Hi Mazzer,
Personally, I would pursue getting a prescription. Not everything works for everyone but one may well work for your mother and that's the only thing that matters. Certainly, the drugs have helped my mother. She has taken Aricept in the past and now, because of her advanced stage, is on Ebixa and Reminyl.

Can you be very blunt & to the point with the GP? I find doctors sometimes don't know how to approach the families & we must make all the efforts. But it's worth it for you to try all avenues.

Take care.

 

[Bristolbelle]

Go to your GP...

any GP can write out a private prescription so if a consultant has said medication my hlep make sure your Mum's GP knows this. We were on holiday last Easter when Mum left her meds at home(woudn't let me check they were packed etc). I went to the local pharmacy to ask for advice and they explained to me all bout private prescriptions etc. Apparently you can not just ask a Doctor for anything it has to be medically necessary but it does at least give people the option of asking thier GP if they can fund their own meds if the problem is one of costs. Good luck - my Mum is in the early stages too, and I know how you feel, luckily she saw the consultant 1 week before the NICE guidelines came in and is on meds!

 

[Sandy]

Hi mazzer,

Alzheimer's Scotland has an interesting fact sheet on this:

http://www.alzscot.org/pages/info/privateprescription.htm

Take care,

Sandy

 

[Nebiroth]

I believe that there is also the risk that, if you get some treatment privately, then it is possible that you won't get any NHS funded treatment. This is said to be because it would be discriminatory to allow some patients full access to both services, whilst the less well off would be wholly reliant on the NHS.

But, as usual, this all depends on the policy of the Primary Care Trust you're in; some will allow patients to mix NHS funded and privately funded treatments and some don't.

Of course, all this would be unecessary if it were not for the absurd NASTI...sorry, NICE, rulings.

In effect telling people "we'll treat you when you get sicker".

I bet they don't tell people with cancer "Come back and see us when the tumour is a bit more advanced".

Oh dear, I'm on my hobby-horse, but it makes me so angry

Unbelievable that had he been diagnosed three months later, my dad would have been denied the drugs that have made life reasonably bearable for the last couple of years.

 

[BeckyJan]

she did add when pushed that in her opinion mum could benefit from medication.

As far as I understand in this area Aricept can be prescribed despite the NICE recommendations. Might be worth you pushing and pushing on this one. (I know that is easier said than done, but just maybe worth a try).

The following is an extract from the Judicial Review update of Monday 2 July:

The current legal position is that doctors are able to exercise their clinical judgement and decide what is in the best interests of their patients, whether or not that is consistent with NICER guidance on prescribing Alzheimer's drugs. However, in law to date, Primary Care Trusts and other NHS funding bodies have only been required to fund drug treatment which is recommended by NICE.
I am sure there are others on TP who are more up to date than me - I hope you get some useful replies.

The other thought is - press for another MMSE on a bad day!!! The score could then possibly be within guidelines!!
Jan

 

[sue38]

My Dad's MMSE score meant that he qualified for AD drugs on the NHS, however we went to see a consultant privately as my mother refused to see the NHS consultant who covers our area for personal reasons.

The appointments were not cheap and it meant that we were out of the loop when it came to all the other services such as OT, SS, CPN etc. We did receive an appointment for the memeory clinic but were told when we arrived that they had cancelled the appointment (not bothered to tell us of course) as my Dad was not one of Dr. T****s' patients and there was nothing they could do for us.

My Dad's GP has now referred him to Dr. T***** and my mum has relented, so we are going to the memory clinic (again) on Tuesday and hoping it will be more useful this time.

As a result I would think carefully about going down the private consultant road as you may find it difficult to access the other services.

 

[Margarita]

if you get some treatment privately, then it is possible that you won't get any NHS funded treatment. This is said to be because it would be discriminatory to allow some patients full access to both services, whilst the less well off would be wholly reliant on the NHS.

I see a loop hole in with that .

hypertheticly speaking , If it was my grandmother , I was earning a good income so was my husband , but my grandmother did not have the money to fund the medication for herself , could I not pay for her to see a privet consultant to get medication out of my saving , seeing that my grandmother could not afford it out of her money , its just a gift

like that she can still get all the rest of the support from social service on the NHS ?

 

[mazzer]

Thank you all

Firstly thank you all so much for your kind replies - I immediatly feel at home- You have all given me food for thought and I will persist with our Doctors - trying a different partner.

My anger and frustration at this stupid test ; Question - What floor are we on (bearing in mind there are cars in a car park clearly visible just outside the window) -

Then what day of the week is it - (its Monday)

Mum..... Its erm Sunday, now erm Wednesday, no no Monday - How many bites of the cherry are they allowed.

I so do share the opinions of some of you that these are not NICE but rather NASTY guidlines and for people like Mum who have worked and saved all their lives, to be told - get sicker, lose more of your brain cells and get more confused and then and only then will we consider giving you something that might help.

What kind of sick society to we live in that we treat our elderly(and in the case of some poor sufferers - younger) citizens in such an appaling and uncaring way.

As you can see I am building for my soap box......

Dad died last year aged 81 after many long illnesses, the bravest and most optimistic man I ever knew. The one thing he got depressed about and worried , was Mums very obvious loss of memory. I promised him obviously, that my sister and I would do our best and in fact I now almost live with Mum (luckily our houses are minutes apart) During the week I work so at the moment she is able to cope and we discuss in the morning what dinner will be and write everything on a notice board by the door - This works mostly......

We do laugh sometimes about her senior moments and sometimes I get exsasperated at having to repeat myself again and again - I almost feel ashamed to say this as I know that she cannot help herself.

I see the fear in her eyes and will never forget her face when the consultant confirmed what I already knew. Sometimes I dwell in the future and then I cry and get so scared....But, as my old grandmother would say 'this won't buy the baby a new hat' so we just pick ourselves up, dust ourselves off and start all over again.......

Thank you all once again, I will chew over all your advice and kind kind words - If and when I get anywhere I will report back and hope to be a frequent visitor to our lifeline.

God bless you all

Mazzer

 

[Laylabud]

After reading some of the previous post if the person that has AD is no longer given aricept, should they or could they be given another drug for the moderate to severe stages of the illness?

 

[Canadian Joanne]

Layla,
For moderate to severe stages of AD, a drug available is Ebixa, generic name memantine. My mother is at the very advanced stage (unable to walk or feed herself, only a few words of speech) and has been taking Ebixa for a couple of years, in conjunction with Reminyl. We are not taking her off these drugs now or in the foreseeable future. Everything seems to be in balance so we don't want to rock the boat.

I had to push quite hard to get the Ebixa prescribed in the first place, as it was only conditionally approved at the time. But it was worth it as it made quite a difference to my mother. So I always counsel to keep steady, persistent pressure on the medicos, with a smile of course.

 

[Nebiroth]

After reading some of the previous post if the person that has AD is no longer given aricept, should they or could they be given another drug for the moderate to severe stages of the illness?

Yes, except that good old NICE have issued guidelines that mean that Ebixa (memantine), which is the only drug suitable, should not be prescribed on the NHS at all (although anyone who had it prior to the ruling will continue to get it)

There have been studies which suggest that a combination of Aricept and Ebixa are more effective than either on their own, but I guess we will never know.

 

[mazzer]

Dear all,

Have discussed the situation with my sister over the weekend, we have decided in the mean time to persue matters with our own GP and push as hard as we can and get a reassessment - hoping for a bad day or even a normal day. Points made regarding loss of NH help in other ways is a bit too scary to persue the private health thing at the moment.

Oh well onwards and upwards

mazzer

 

[Laylabud]

Layla,
For moderate to severe stages of AD, a drug available is Ebixa, generic name memantine. My mother is at the very advanced stage (unable to walk or feed herself, only a few words of speech)

Thank you Joanne


Sadly i am not sure if my mum would get this because of the NICE Guidelines in this country.

Thank you for your support

 

[Clive]

Mp !!

Hi Mazzer

When I get steamed up about the NHS I go in person to my MP’s surgery and ask for his help and advice, and tell him that I think he should be sorting these problems out for mum.

Sometimes (but rarely) he has been helpful in writing to the NHS.

It might not help your mum today, but it may lead to better treatment for her and others in the future.

And I always feel a bit better having told the MP what I believe should happen.

Best wishes

Clive