|
Post by contrarymary on Jun 24, 2016 9:22:45 GMT
hi gc7 sorry you're having such a tough time. this is something where some forumites have expertise, altho they don't come here very often now. but some have a role representing patient experience to official bodies. perhaps one of the admin could point you in the right direction. roland? annie?
|
|
|
Post by annie on Jun 24, 2016 12:01:21 GMT
I'm appalled at the way you and vagueandrandom are being treated by the NHS and feel very frustrated on your behalf.
My understanding of the status of NICE guidance is just that -it is guidance. When I've asked this question before (to our CCG and MHT) I've been told it is only guidance. However,an organisation has to explain why it is refusing to implement the guidance and, for an organisation, that is much more difficult to justify!!
|
|
|
Post by contrarymary on Jun 24, 2016 19:53:33 GMT
annie it seems you may have been somewhat misled. I've had some specialist advice from a former forum member who has successfully pursued a case in their own local area. NICE clinical guidelines, although referred to as guidelines, MUST be followed by the local Clinical Commissioning Group (CCG) unless they have a very good reason CCGs must give good and detailed clinical grounds for not following NICE guidelines on scientific medical grounds. Legally, disagreeing with the policy is NOT considered to be a good reason, nor is wanting to save money. The legal precedent which established this is known as the Rose Challenge, details are heregc7 if you can get some help to mount an appeal it seems not only do you have right on your side, you also have the law. And may be able to get things in place for other local people in the future. Is there a local advocacy group? (It would be good to have this sort of information available on the forum. Does anyone belong to an organisation, charity, body that is campaigning / lobbying to get this more widely understood, who could perhaps supply these sort of national guidelines, legal precedents etc?)
|
|
|
Post by annie on Jun 25, 2016 11:37:24 GMT
Bother. I was in the middle of writing a response when I had to answer the phone.... and then my computer crashed!!
Contrarymary, your friend and I are singing from the same hymn book.
My post was rather brief and clearly did not get over the message I intended. NICE guidelines take several years to develop. The Committee who eventually publish the Clinical Guidance draw on a wide range of evidence from research, clinical trials and it's only after due consideration that Guidance is actually produced. In the past, when I have put pressure on our local CCG and MHT I was given the argument of "it's guidance only". Not to be deterred, I pursued the organisations, asking what evidence they had amassed which allowed them to ignore the CG. Needless to say, just as in the legal judgement you refer to, no coherent argument was put forward and eventually progress has been made!
I should point out that, in pursuing the 2 organisations I wasn't looking for a response which met a particular individuals needs. My main concern was to establish the right for many people to have an ADHD service which supported the provision of quality service for the assessment/dx and treatment of children/young people and adults.
What I learned from this exercise (a belief I've always had)) is that, success is more likely to come about when Users, be that parents,young people and adults, work collectively to bring pressure to bear, rather than if they work individually. Our area does now have an Adult ADHD clinic which is supported by our 6 local CCG's. However, in my opinion, it has some way to go before it can be described as comprehensive and inclusive. Our area also has an established Adult ADHD support group which has the opportunity to hold the CCG's and the MHT's to account for the service they provide - this is an enormous task but, hopefully will succeed.
Thank you for the link to the legal judgement and I do hope individuals will use this when applying pressure on their local organisations.
The only other comment I would like to make is that it is not only CCG's who MUST take account of CG. The same MUST apply's to MHT. If people are already being treated by their MHT for a condition which is frequently co-morbid with ADHD, they have a right to expect the MHT to have considered how they are going to implement the NICE ADHD guidelines. A frequent response from MHT's is for them to say their CCG's have not financed such a service.This is not a valid reason if the MHT cannot demonstrate that they are working closely with the CCG's to bring about the provision of the service.
|
|
|
Post by contrarymary on Jun 27, 2016 15:56:33 GMT
this sounds terrible. i'm so sorry you are going through this.
if you can, prob worth shelving the letter for a few days so you have time to process all the rubbish it contains rather than getting swamped by it.
i can't believe they are going on about needing antenatal information. that means before birth. i've never heard of anyone else needing to give info about before they were born. ffs. what on earth is going on?
a note of reassurance. i've had all sorts of crap from all sorts of quarters, docs writing letters with all sorts of errors of fact, misunderstanding etc. i know it can feel overwhelming, swamping, as tho there can be no going forwards. you are not mad, this is not the end, it will get better.
there is stuff you can do, and once you have a goal and a bit of a plan to get there you will feel empowered. do what you can to not let this misunderstanding and poor service affect how you feel about yourself, life etc. repeat - it can and will get better. you can do it. for today, be gentle with yourself.
|
|
|
Post by annie on Jun 27, 2016 17:32:04 GMT
Your letter of response in relation to your letter of complaint is absolutely baffling. Never heard about ante-natal information being an integral part of an ADHD assessment!!
If I remember correctly, this assessment was carried out as an "out of area" referral to a specialist Adult ADHD service, outside your local area - have I got that right?
|
|
|
Post by vagueandrandom on Jun 27, 2016 19:43:04 GMT
Hi all! I was going to post this in my diary, but our difficulties are similar, so I'll put it here. .
So, I got the report back from the 'Locum Consultant Psychiatrist' and it doesn't include any of the bits I wanted to complain about.
He acknowledges that I have been dx with ADHD, although he keeps referring to it as my problems with attention and concentration.
His conclusion is "a complex history of chronic depression with perhaps personality difficulties and emotional instability along with some features of Attention Deficit Disorder"
My argument with him was that my emotional instability etc. . are symptoms and comorbidities of ADHD. .
Now he's a general psych, who obviously doesn't know much about ADHD, so is treating the obvious depression
and MH issues that he can see, in a way that he knows. .
It seems that it was my GP misreading his report that is now the issue.
I've just read the whole of the NICE guidelines and think that I should be referred to the specialist unit
as I'm taking meds that are not being supervised or titrated by an ADHD specialist. . .
and it's nearly a year since I was dx and started on mph, so, according to the guidelines I should have an
annual meds review by an ADHD specialist. .
any more thoughts?
|
|
|
Post by vagueandrandom on Jun 27, 2016 22:02:37 GMT
Thanks gc7 What's frustrating is that he repeatedly said to me that he thought that there would be no benefit to me to treat my ADHD and thought that my emotional instability and underlying problems should be treated first. This wasn't mentioned in his report. Neither was his suggestion that I took an antidepressant, and my refusal. He also noted that the mph wasn't having any benefit, when I told him that the only benefit was a slight regulation in my moods. . which I suggested was due to not being on a therapeutic dose as I hadn't been fully titrated. . . also not in the report. . just mph of no benefit. And there's nothing conclusive to show that he doesn't understand ADHD beyond concentration problems, which was obvious to me during our meeting. At least he confirmed that I'm not suffering from delusions.
|
|
|
Post by vagueandrandom on Jun 29, 2016 11:33:36 GMT
Update: I spoke with the advocacy service yesterday after sending them a copy of the report and extracts of the NICE guidelines regarding medication.
We agreed that the quickest option would be to go back to the GP and ask to be referred to a specialist regarding my medication.
I've made an appointment with the same doctor and have written this for him to read before we discuss things (and I possibly get emotional and argumentative again):
"At my last appointment I requested a referral to the Adult ADHD Service in Wakefield. This request was turned down as I was told that the Consultant Psychiatrist’s report said that my diagnosis was inconclusive, so my referral would be turned down. I have since received a copy of the psychiatrist’s report, which acknowledges my diagnosis in London of ADHD.
I was started on medication for ADHD (methylphenidate, both IR and PR) a year ago and have had no specialist supervision, nor completion of titration, since September 2015. The Consultant Psychiatrist is not an ADHD specialist and has continued to prescribe methylphenidate at the same dose that I was started on a year ago, which is not at a therapeutic dose.
My previous ADHD specialist, wrote a letter in order to ease my transition to services in Hull. His last paragraph states “She has not thus far experienced clear benefit from Concerta although it seems reasonable to continue this trial at a higher dose. If possible it would be helpful for her to be seen by someone locally with some experience of ADHD” ………………………………………………………………………………………. The NICE guidelines state:
People with attention deficit hyperactivity disorder (ADHD) who are starting drug treatment have their initial drug dose adjusted and response assessed by an ADHD specialist.
ADHD specialist A mental health specialist trained in the diagnosis and treatment of ADHD. This may include a specialist psychiatrist or, for children, a paediatrician. Drugs for the treatment of ADHD may also be prescribed by a nurse prescriber specialising in ADHD or other clinical prescribers with training in the diagnosis and management of ADHD.
People starting drug treatment for ADHD should be closely monitored for side effects, particularly during the initial treatment period. Initial drug doses should be adjusted to ensure that any unwanted effects are minimised while optimising beneficial effects.
NICE clinical guideline 72 recommendation 1.8.1.3 states that during the titration phase doses should be gradually increased until there is no further clinical improvement in ADHD (that is, symptom reduction, behaviour change, improvements in education and/or relationships) and side effects are tolerable.
People with attention deficit hyperactivity disorder (ADHD) who are taking drug treatment have a specialist review at least annually to assess their need for continued treatment.
There are a number of potential side effects associated with drug treatment for ADHD; therefore people taking drugs for ADHD need to be monitored regularly. Side effects from drugs to treat ADHD can reduce adherence to treatment. In addition, without regular monitoring there is a greater risk that drugs prescribed to treat ADHD will be misused.
……………………………………………………………………………………..
As I have been on medication, unsupervised by an ADHD specialist for a year and titration has not been completed, I feel that it is necessary to be referred to an ADHD specialist for an annual medication review."
So the appointment's next Thursday (7th) and the next appointment with the psych is next Friday. . .I will raise a complaint against my GP if he refuses to refer me again.
|
|
|
Post by marionk on Jul 6, 2016 18:59:08 GMT
No complaints from me!
If you aren't already, and it sounds like you aren't, you should claim PIP. I seem to recall something about it being for "increased expenses due to disability".
|
|
|
Post by marionk on Jul 7, 2016 12:20:45 GMT
Re: PIP Apart from effectively filling in a minor form over the phone before they would send out the form proper, I don't remember it being too much hassle. I do get help filling in forms, though, as I can never manage them on my own. Compared with ESA it was a doddle.
CAB can help but they usually have loads of people waiting to be seen so it takes ages. See if there is an advocacy scheme in your area. MH crisis team can point you in the right direction, even if you aren't actually registered with them, possibly your local surgery might have information too. Try googling "one advocacy" first though.
|
|
|
Post by contrarymary on Jul 7, 2016 14:00:45 GMT
not been on the forum for a while, popped in & see you have been having a time of horrible things. ((((((( gc7))))))) xx
|
|
|
Post by shiningbright on Jul 7, 2016 18:04:23 GMT
Hi, just wanted to send you some hugs and love... You're a stronger person then me, I'm not even gonna bother trying to fight for a diagnosis, I don't have the emotional energy to do so. So well done you and I'm prayer for you (and all those who have similar struggles).
It's not an ideal option - and depending on your confidence levels - if you keep facing barriers, you could try contacting a sympathetic media outlet and 'selling' you're sorry or experience. I could never do it personally, but I'm a brush it under the carpet sort.
Alternatively, you could try writing a letter to your local Mp/counselor - it's their job to make sure that matters of important or being dealt with properly in their constituency, so f you don't get the outcomes you need through normal chances, you can tell them and they can work in part towards correcting roots in their constituency.
Those aren't ideal options, but they're maybes depending on your needs/desires.
I raise my hat to you for all you are facing *hugs*
|
|
|
Post by vagueandrandom on Jul 7, 2016 19:29:24 GMT
Update: saw the GP. . .started with "did you get my letter?" . . he said yes and that he'd already sent off a request for funding from the CCG , but didn't seem very hopeful. . .he's included a copy of my letter and all of the consultants letters, so I know that I've made a good case. . .he said we should know in in about a month. . . I was very calm and went in with loads of paperwork expecting a fight. . . so, on the right track. .but that's for funding. . .I'll then (possibly) be on another waiting list. . .will this never end?!! shiningbright I was in the process of writing letters to MPs and councillors just before the referendum. . . no point in sending any now until we have a parliament! Both Labour and Conservative parties are in disarray and no-one's going to be interested in someone's individual difficulties . . .I'm keeping them on ice for when they've pulled themselves together. gc7 you could try your local Mind . .some of them do advocacy and can help with PiP
|
|
|
Post by shiningbright on Jul 9, 2016 8:44:02 GMT
Mind are good, I used them an age ago, when I was struggling with everything (lost my job and was close to loosing my house), they helped me sort my bills out and helped me handle phone calls. They also gave me somewhere to go for some company, 'cause I lead a rather solitary life and back then it wasn't helpful to my needs.
I hope all goes well for all of you ;-)
Yeah @vaugeandrandom, the MPs are like dust in the wind lately, but they will sort themselves out soon enough. I don't even know who my MP is anymore...
|
|
|
Post by smogz101 on Jul 9, 2016 18:37:09 GMT
hi gc7 ... I had a similar issue a few months back, I'm a student so have a HC2 form that entitles me to free prescriptions.... didn't realise it was a month out of date and id ticked the HC2 box twice that month. Renewed it as soon as I realised but got 2 letters through the post both of which were penalty fees! 60 quid for each item!? I rang them up and explained it was a genuine mistake and my circumstances had not changed during that month, and renewed the HC2 as soon as i realised it was out of date - but they were having none of it. Spoke to my tutor at uni and she advised me tell them about my ADHD and dyslexia diagnosis as I have genuine reasons for poor short term memory/organisation. So rang them back up and after another lengthy call (and the lady speaking to her supervisor) they said to send in evidence of both diagnosis and they would be in touch with a decision. Did this and then a week or so later got a letter saying on this occasion they would scrap the penalty charges but still needed to pay the prescription costs (8 summit) each. .... So its definitely worth appealing. Those charges are there to deter people who claim fraudulently, and I do agree with them. However, its so easy to make a mistake - whether it's ticking the wrong box or not realising certificates are out of date! It would be better if they just made everyone show they're certificate each time, but they wouldn't make their money that way would they! Ive just had another fine through the post - this time for staying 62 seconds over the free parking period at the hospital. They got rid of the barriers and introduced a new system where you have to type in your vehicle reg - again all new to me. If it was the old system, I wouldn't have been able to get through the barriers so would have paid the 3 quid parking. But instead I've been slapped with a £70 fine - infuriating!
|
|
|
Post by marionk on Jul 14, 2016 3:40:49 GMT
One law for the rich, one law for the poor, which equally permits them to fight legal battles. I think, that in order to prove the psych/doctor wrong/incompetent, you need to prove that you have ADHD. Then you could possibly sue them for damages, but they would probably be able to get away with it by saying that they based their decision on the information they had been given at the time, or some other such nonsense. Regardless of how much money either side has, it is very easy to prove that you had a psych evaluation that you have not paid for. Incidentally, and I think I mentioned this before, if you were to try and fight this in court, you would need the assessment/dx, and the various letters to be on record. Just apply for PIP. It's a lot easier than ESA, and will be massively more in the long term than the psych's fee.
|
|
|
Post by shiningbright on Jul 15, 2016 8:25:32 GMT
((Hugs)) gc7I've been following your posts and I'm so saddened h y your treatment and the hardships you faced trying to get the help you need. I sometimes thing I should get dx but I honestly don't have the emotional strength to go through what you've gone through. Yo ure very strong and brave I think. I really and sincerly hope things improve fast for you.
|
|
|
Post by shiningbright on Jul 15, 2016 15:41:15 GMT
gc7 I really hope it works well for you :-) glad you've finally got something looking up for you on that score ;-)
|
|