ADHD on going private prescribing costs

[Gillybilly502]

I need some advice please. We recently went down the private route to have my son assessed for ADHD, which indeed he is. The cost of this was best part of £800. The medication he has been prescribed has been life changing for him. However I didn't realise there would be on going monthly costs, a monthly prescription review £195 and the medication itself which is £100 per month. This £300 monthly cost is just not sustainable for us. Do any of you have advice on this? Thank you

Hi
Our NHS GP took over responsibility for our son's meds via a 'shared care arrangement'. These are fairly standard and used for many medications, not just private to NHS e.g. they are also used to shift the prescribing methadone from specialist substance misuse NHS providers to primary care.

On an annual basis we have to pay for a private consultation with the original prescribing doctor, but the NHS cover the actual prescribing.

I would hope all GP practices would agree to this.
HTH

Hi, I’m just at the start of this journey so not terribly knowledgeable but I understood that once a medicine was found to be working consistently for your teen then reviews should be less frequent (our psychiatrist has suggested once every six months) and your private provider should be helping you move over to NHS prescribing.

GPs cant prescribe ADHD meds for kids initially but are often happy to sign off on them once a psychiatrist has prescribed.

your private clinic should be helping you set out a route going forward. Good luck!

Ask your GP if they will share care - some will and some won't, with the private sector - there are valid reasons for them not to. Was the diagnosis done by a consultant psychiatrist, or by a nurse/pharmacist? if they won't share care then you'll need to pay until your child reaches the top of the NHS waiting list, or find a GP practice who will. Monthly review shouldn't be needed once stable (you'll need 6 monthly review), but most charge about £50 or so for doing a script outside of an appointment.

Actually it's probably a minority that do - but worth asking. There are lots of issues why it isn't always straightforward.

yes talk to your GP about a shared care agreement. We had a private diagnosis but our GP surgery (who are disinterested at the best of times) do not do any ADHD prescribing for any patient at all because (in the words of my GP ) it 'takes up too much time and is too expensive for us' and so we were then put on a waiting list for a private company the GP surgery had outsourced their prescribing to. We were on that waiting list for a year and had to pay privately the stonking costs until we got a slot.

So- start with the GP. Or start with the psychiatrist who diagnosed- they ought to have talked to you about shared care agreements and how that process works.

Apparently the NICE guidance/rules changed very recently, we were told GPs can no longer take over prescribing, and that the only way to get medication on the NHS is to get diagnosed on the NHS. So those commenting about shared care may sadly be out of date. (This was for an adult, not a child, but I assume the rules would be the same)

No, that's not correct. It's up to individual GP surgeries to decide if they are happy to share care. That decision will depend on a variety of things, including the qualifications of whoever made the diagnosis in the private sector. Whoever told you that doesn't have any understanding of how NHS primary care works.

Speak to your GP. All records and notes etc from the private psychiatrist should be forwarded onto the GP and after 3 months of private prescriptions, under shared care, you should be able to get the meds on the NHS.
I must say your private prescription charges are very high - have you tried changing pharmacy? Eg: my local Asda charges £28 for a months supply of Medikinet XL. Also monthly reviews seem excessive, I thought reviews with the psychiatrist took place every 3 months and any probs with the meds could be discussed over the phone

@androidnotapple, it was our GP! Helpful to know in case we want to kick up a fuss.

It’s not much help now but for anyone on the thread who is thinking of going down the route of private diagnosis it is probably a good idea to speak with your gp first regarding shared care.

Ive seen lots of anecdotal evidence of people being denied shared care and facing paying for prescriptions they can’t afford.

I don’t have the knowledge of @androidnotapple and don’t know the individual circumstances of people who report being denied shared care but better to understand the situation before parting with money.

oh dear!

It is possibly that your local ICB has guidance against sharing care with the private sector. That might be what they meant. But it would be guidance, not rules. However, as I said, GPs are under no obligation to do this, it's quite a lot of unresourced work at a time when GPs are struggling and can't recruit.

very good point.

It does depend on where you are, a bit.
Some GPs will share care with private providers, but most won't. Most Health boards /ICBs advise against it.
In my area, the children's service have capacity to take on patients so you can transfer from private provider to NHS consultant, which allows your GP to do NHS shared care. The adult services are oversubscribed, so you need to stay private for the length of the waiting list.

Thanks everyone, you have all been so helpful, very much appreciated

Thanks to everyone who responded on this, just to update you, my GP has agreed to a shared care agreement.

That’s great news!

This is why people are going private though. The whole NHS is struggling. What extra work does it cause a GP?

Our GP refused shared care so we are continuing to pay £25 for a prescription to be written and £50 for a months worth of medication every month. The only thing we can do now is sit on the NHS waiting list. It's wrong.

Time in reviewing the original prescription for appropriateness (there is some oddball prescribing goes on in the private sector), for safety, making sure monitoring is up to date, making sure that the person is still going for review.

I'm not sure you understand how strained primary care is. Practices are closing on a regular basis as they aren't viable any more. Shared care needs to be funded.

That's great. Our GP has said she will do shared care, but only after 6 months and we will still need to pay for 6 monthly reviews with the private psychiatrist. I can live with that! Counting down the months until it kicks in!

Well what do you suggest as NHS waiting lists for ND issues are up to 4 years and parents are desperate as school and home life starts to fall apart?

People might have enough to pay for a one off report but ongoing prescriptions are costly. I think everyone would prefer the NHS if there was one, but there isn’t. Why is it harder to issue prescriptions for a private diagnosis than an NHS one.

I bloody wish my self harming ASD Dd could have see a child psychiatrist on the NHS but the waiting list was 18 months. So we had to go private. What else could we do?

I have to say I agree with this. I understand NHS is stretched and so getting a private assessment and all the ongoing follow ups is hard. But it does seem to me that if I've paid out all the money for private, the least the NHS can do is meet me half way with shared care once things have settled down.

My GP was very helpful but very clear - she'd do the prescriptions, but she can't actually manage his ADHD and that needs to continue to be done by the private specialist. That felt like a reasonable compromise to me.

I suggest that the govt properly funds the NHS. GPs cannot take up the slack for everything. There are all sorts of safety and medicolegal issues about sharing care with the private sector which don't apply to sharing care with the NHS. These are controlled drugs which adds an extra layer of medicolegal complications.

And as GPs we hate the waiting lists etc as much as everyone else. I spend my whole day apologising for things that have gone wrong elsewhere in the system. It's rubbish. But us acting in a potentially unsafe way, or taking on work that we are not resourced for, is not the answer.

The great thing about the NHS is that there is nothing in it for them whatsoever to misdiagnose. Plus they have loads of rules to abide by.

But a private practice is a business. Bottom line is profit. If a customer basically says to them 'I'll give you £1000 to tell me I have adhd' then they will tell you you have adhd.

So I'm not remotely surprised many nhs gps won't get involved in sharing,

Which leaves everyone in a massive dilemma, as a pp said, what are they supppsed to do - wait too long for a correct diagnosis, or scrape together the cash to try to get their child help.