Effective Treatment Stopped for Other Issues

[adridude]

Hi,

 

At age 12 I was diagnosed with ADHD and have been treated with stimulants ever since. Because I was on them for so long, my system got used to them and recently I was moved to a MUCH stronger medication which is a restricted substance too.

 

Despite having had a long history of high Blood Pressure, my GP REFUSES to carry on this ADHD treatment (or any) as the BP takes precedence (in her eyes).

 

Luckily I have a week's worth left so i can pretty much keep a clear mind open, think straight and logically for the next week.

 

I asked her NOT to remove me from the medication, and instead treat my high BP like she would any one else. She refused.

 

I explained that WITHOUT my medication, I am unable to focus, I get badly forgetful, my motivation goes down the drain, I won't be able to do my work (I run some companies), and eventually spiral back down into the pit I was in several years ago when I wasn't being treated. She still refused.

 

Surely I have the right to disagree with what she says? What REALLY concerns me is that not being on ANY medication for my ADHD will affect my companies, start me drinking again (which stopped when I went back on medication), end up with the spin-offs of ADHD again i.e. depression, anxiety and various anti-social disorders.

 

The ADHD specialist which prescribed me this new load of treatment said if the high BP continues, then we are unable to help you any more. I don't give a flying **** about my BP, it's nice to be human again, work positively and be productive...

 

Can ANYONE point me in the right direction as to where I can find out my rights...

 

I'm an inch away from having a panic attack that my entire life will be pulled out from under my feet

[Nystagmite]

I don't give a flying **** about my BP,

 

A high BP can cause a lot of issues.

[adridude]

I do realise that, and totally accept the responsibility for that. But I personally rate the years of sanity, level headedness and ability to be in control of my life more important than BP.

 

I'd rather have a short happy life than a long miserable one. Surely that is my prerogative?

 

I see this exactly the same was as how surgeons get surgeons to sign indemnity forms before surgery as for every pro there are major cons or even possible death. Is there no way I can apply this to my situation?

[assisted blonde]

Try seeing a different Dr but they will treat what they consider the more serious illness first and other illness will take second place, prehaps there is a different drug you can take for the blood pressure which will enable you to continue with the ADHD drug, although if you are becoming immune to somthing and the dose has to be raised or the drug changed it is not a good thing

[Sali]

I agree with you. I think ultimately, after listening to the advice from medics, the patient should make the final decision. I know somebody who refused an operation for cancer and they were not forced onto the operating table against their will. You can prescribe somebody statins, but that does not mean they will take them. Obviously, if we have ignored advice and suffer the consequences, we also cannot blame anyone but ourselves. That's fair enough I think.

 

Is there such a thing as a specialist in this area that you can be referred to - a consultant or psychotherapist? Perhaps they would be more au fait with combo drugs used to treat ADHD and high blood pressure. (I am a little confused because a quick google shows that bp drugs are also used to treat ADHD).

 

I understand your comment about quality not quantity of life, but I guess danagerously high bp could result in stroke or heart attack which may not kill you but would probably severely impair the quality of your life.

 

You are rather caught between the devil and the deep blue sea. This is why I think speaking to a specialist may help. You must be suffering extra anxiety with the prospect of your ADHD drugs running out.

[adridude]

In regards to ADHD treatment (in adults), stimulants are used. The main two culprets are dexamphetamine and methylphenidate (both which are amphetamine based). This is where the high BP comes from, in short it's clinically controlled speed lol.. I've discussed that option with them, the specialist doesnt like it. He used the analogy of 'forcing one side of your body to lose blood whilst getting a transfusion on the other side'. I had to laugh as it's nothing like that, but I saw where he was coming from.

 

Unfortunately, since I moved to the UK (03) it took me until 2007 to get referred to the nearest specialist (which is South London & Maudsley Hospital Adult ADHD clinic). There are ADHD specialists ALL over the show, but only a miniscule handful licensed by NICE to work with adults, hence my dilemma.

 

I understand your comment about quality not quantity of life, but I guess danagerously high bp could result in stroke or heart attack which may not kill you but would probably severely impair the quality of your life.

 

Isn't that like saying: "I could get on an all expenses paid flight to the bahama's but if I get on the plane it would crash, which would make my life more miserable that it is now"

 

I think I'd go for the Bahama's thanks The near to 5 years of not being treated I had drove me into the ground, I lost all sanity, I drank, I had bad debts, lost jobs, you name it. From the moment I was treated back in 07, life's been on the TOTAL up and I haven't looked back.

 

You must be suffering extra anxiety with the prospect of your ADHD drugs running out.

 

I've got backups I always make a point of asking for extra 'just incase' I can't get in to pick up more. So I'll be fine for a few weeks. The anxiety I'm getting is PURELY because they have me facing the possibility of going back to that horrid dark place I came from pre 2007. For the first time in years, I came home and cried silently about it out of fear, and I thought nothing could scare me... THis does

[Sali]

Then your only option is to return to the GP and state your case. If she/he continues to disagree with your choice you must ask what the process is for challenging the decision. I do not know how long this will take or if there is some kind of compromise you can reach.

 

Obviously I am not very knowledgeable about your condition - although I have read recently that ADHD is being more frequently diagnosed in adults, but it sounds as if the health service has yet to catch up with this trend. Are the drugs addictive like anti-anxiety drugs? Do they become less effective over time? How often are you re-assessed? Can you recover?

[adridude]

I did already show my case. They;ve known me for years and have a good history of me co-inciding with the bad events of my past and the better events with the days since I was treated. Fine, so be it that I still have sleeping issues, but I still have a MUCH better life than I did. Despite this, my treatment has been put on the stop for now.

 

Unfortunately the drugs are addictive and are readily open for abuse. They are openly amphetamines. Despite having a drinkers past and a users past too, ADHD medication were the only ones I actually had respect for as they pulled me from the pits. The docs have all evidence of this, but they still regard my BP more important than a better quality of life.

 

I do, and totally agree with their decision that high BP is REALLY bad, but I've weighed up the pro's and con's and the pro's outweigh the con's. Since being treated I've opened up two companies. FIne the first one failed, but the other is doing well, my debts (which I incurred thanks to my history) are being paid off, my family bonds have been rebuilt as were my bonds with my friends..

 

What grounds have I got to contest this ? I really don't want to be sent back to where I came from, that life I left happily behind and quite frankly I'd rather be locked up in an institution than go back there.

[adridude]

Just to add, would you happen to know of any Ombudsmen etc... which I could contact about this? THe Primary Care Trust 'don't intervene in clinical decisions'..

 

On another note I remember seeing on the news a few weeks back a mother who was MADE to make her child go to treatment for a lifethreateneing illness, so I know there are bodies out there who to take aprt, question is who are they...

[stu007]

Hi

 

Please remember you are fully entitled to ask for a Second Opinion.

[assisted blonde]

I suppopse you could try going private, as they are prehaps more inclined to listen to you and prscribe on a private precsription

[Feebee_71]

The problem you're likely to come across is that, while you say that your quality of life is more important than your blood pressure, the Dr's will see it the other way round - without addressing the high blood pressure (in your case by stopping the drugs they believe are causing it to be raised) you could have a stroke and end up with no life to have quality in.

 

Also, I don't think there is mileage in your mentioning that a mother was forced to allow her child to have treatment for a life threatening illness, what you're trying to argue is the opposite of this - you want to force the medics to offer you a treatment that is causing you other health problems against their professional judgement.

 

Sorry if this isn't what you want to hear but I think it's important to show you where you might have issues with the direction you want to take. Your should ask for a 2nd opinion from another Dr at the surgery if you want to pursue this.

 

Feebee_71

[zippygbr]

first question - who is suggesting stopping the drugs ? - from reading your OP it;s your GP and i am suprised that s/he is in sole charge of prescribing ADHD treatment

 

if it's not your consultant - you need an urgent appointment with him/ her

 

if it is the consultant you are entitled to a second opinion from another suitable consultant - you can ask to be referred to another trust for this .

 

however you cannot engage in rounds of consultant shopping to get the answer you want ...

 

also

 

OP how old are you ? and have you had any trial reductions in this drug previously given there is a suggestion that people can 'grow out pf' some types of ADHD conditions ...

[adridude]

1) Yes the GP spoke to the ADHD Doc and he told her not to prescribe until further notice

2) She doesn't prescribe, the ADHD doc did, and he gave me a repeat prescription that is conditionally repeatable on a monthly BP check i.e. the one I failed

3) I'm 33, I get a yearly consultation and they have tried me on all doses ranging form none to something higher. They're good at keeping tabs on how the medication is (or isnt) affecting me, and they often trial me not being on it as a comparison to being on it. This trial period causes havoc in my life yearly as I can get no work done due to the constant changing of my moods, concentration etc...

[zippygbr]

sounds like you need an urgent appt with the consultant then ...

[adridude]

I kinda did that a moment ago. I heard from his office that he was at my medical ctr doing a clinic, so I sat outside the clinic and waited all afternoon for him to come out. He checked my BP, saw it was ok and said he'll have a word with my GP tomorrow as he thinks the GP over-reacted and gave him an incorrect BP reading. Aparently the one she gave him over the phone isn't possible (185 over 100). he said I should be in hospital if it was that bad. Looks like my GP was a numpty :-/ Will know more tomorrow though!

[Feebee_71]

Adridude,

 

Apart from that one BP reading given to the consultant by the GP what is your BP usually when it's checked? It is possible that it can be as high as the GP recorded and for you to be functioning normally - especially if it has crept up over a few months and then had a bit of a spike recently - though that reading is most definitely elevated compared to the average for an adult of approximately your age.

 

Feebee_71

[assisted blonde]

just a thought i have regular bp readings and if a larger cuff is used it gives a normally lower reading than a smaller one, they said it was something to do with the area coverered? also bp can vary from reading to reading so if you are stressed under the weather etc it can affect it , maybe another reading will show all is within normal ranges

[adridude]

My BP has always been 10% above average. Even dating as far back as when I was a teeny tot in juniorschool I remember the dc sending me for all sorts of tests because he was concerned. I guess I just have higher stats than the norm. Funnily enough my heart rate at rest is 85BPM which too is high as per the averages. Despite being really healthy, excercise alot it's always been high.

 

Just to add, I get a quarterly checkup as it is and it's never flagged as being bad :-/

[Panthro]

First of all, if we had to admit everyone with a BP of 185/100mmHg or above, the whole NHS would collapse. Also a 'normal' resting heart rate is 60-100. One BP measurement is pretty useless anyway and your BP can be affected by a whole host of factors (you thought about white coat sydrome?). This situation might have been caused however due to poor communication from your consultant - GPs are very good generalists but they are led (quite rightly) by the specialists and if the consultant said prescribe only on basis of BP less than X then he is quite right to withhold. A good GP of course would understand that these are recommendations and their clinical judgement of the patient and their situation should be included in their decision-making.

 

GP blames the consultant and vice versa which leaves the patient frustrated. Your gripe is probably more directed at the consultant than the GP who is taking the Nuremberg defence!