DS: Best Interest meeting/depot injections/fear of needles

[Lowenna1469]

DS, our eldest, is on a Section. Working diagnosis schizophrenia. He goes missing, often, and manages to do so, somehow, even from a locked environment. Usually by taking advantage of unaccompanied leave which has just been reinstated as he hasn't disappeared for a few weeks.

When he goes missing, he neglects himself dreadfully and often sleeps rough.

Tomorrow, there's going to be a Best Interest meeting as the clinicians want him to enforce deport injections, especially if he's going to move, as seems likely, to a transition facility prior to being back in the community. DS is very scared of needles - he probably has a phobia. Our fear is that if the decision is made to force the issue, this could erode his trust in us (we'll be at the meeting) and set him up for fear of needles for a very long time - when they are necessary from time to time.

He won't allow the hospital to take bloods which they'd like to do for a proper blood count. But of course depot is different - if I'm right, it's potentially more painful and injected where there's most muscle eg buttocks. The prospect of our son being restrained is very difficult to contemplate. But I can see where the hospital is coming from.

We'd like them to consider waiting for him to stabilise more, to undergo some therapy (we're trying to arrange music therapy for example), perhaps even hypnosis (is that a ridiculous idea?).

Anyone thoughts or suggestions? Many thanks.

Sorry to hear you are experiencing this.

Firstly, I think you are right to be concerned.

Being forcibly injected and restrained is incredibly invasive and traumatising and has the potential to impact his recovery - perhaps outweighing the benefits of the medication or at least neutralising them.

In the meeting you need to raise your concerns and ask what other alternatives have been considered.

Ask why they believe the benefits of the injections outweigh the risks.

There are a number of studies that suggest injectables provide better long term outcomes (see below).

However I think you can argue that in his case oral medication may be the better option and ask why they do not want to go down this route.

For example if oral medication can help stabilise him, he may become more amiable to injections in the future, especially if given support for his phobia as part of a transition plan.

I think you need focus on the fact that even whilst sectioned, there remains a duty of care to offer the least invasive treatment options and restraint to facilitate injection does not represent that when oral drugs are available.

www.hindawi.com/journals/schizort/2012/407171/

pubmed.ncbi.nlm.nih.gov/6113735/

That’s a very sad situation.

Is he accepting oral medication? Is he willing to do so if it means he doesn’t have to have injections?

A needle phobia would be difficult to overcome and even when his mental health has improved, his needle phobia will still be there so he is never likely to be able to agree to depot. Seems short sighted to enforce it as it’s likely to compound the needle phobia.

Just to add - make sure that his needle phobia is on his clinical notes and logged with Social Services/his Social Worker.

I'd also make the point that whilst you are open to treatments to address his phobia, there is no instant magic wand and thus isn't a sustainable plan.

In hospital they can restrain to inject, but that's not going to happen in the community.

Remember the studies don't say oral medication is ineffective, just less effective in the long term and that's not based on data with needle phobic patients (if it had the conclusions may have been very different).

BreadInCaptivity and DontKeepTheFaith - many thanks indeed for such helpful and speedy responses.

I've taken a look at the two studies. They've given me more insight in fact into DS' condition as well as being very interesting in relation to depot.

I agree with you both. DH and I are concerned that beyond anything else this is premature if it it were a good idea. He hasn't been in hospital, this time, for very many weeks. During this period, he went missing for one night which is a huge improvement on previous occasions when he's missing for significant lengths of time. He won't take his meds unless they're given to him but he is, to answer your question DontKeepTheFaith willing to take them in hospital and doubtless would be in the follow-on facility.

While we understand the medics' concerns, we think that compulsion could quite easily cause chaos (DS has expressed his fear very clearly and as recently as today in a review meeting - he was upset to learn that he couldn't be present at the Best Interest meeting tomorrow). We would like to explore, with the hospital and community team (who'll also be present) more gentle and therefore sustainable approaches.

He doesn't have a social worker (in fact we asked the hospital to clarify this at the review this morning). This is concerning. And, yes, what a very good idea to ensure that his phobia is recorded, at least on his mental health trust notes. Thank you for that suggestion.

I''ll update tomorrow - and thank you again from DH and me.

You are very welcome and good luck for tomorrow.

You definitely need to press for support from Social Services @Lowenna1469.

You don't say what age he is but over 19 he'd fall under the remit of Adult services - ring them and explain the situation and that he needs support and request an assessment (first link below).

He's going need support as he transitions out of hospital and you need to ensure you and he have access to everything available that he is entitled to. First rule here is if you don't ask you don't get, so ask and get SS involved asap. Access to a good social worker can be life changing. They will know the law re: mental health, local facilities etc.

Second link is about the rights of the nearest relative which I'm assuming you or your DH are. You need to understand this. It's different from next of kin and you (or your DH) have very specific rights to protect your son. The NR is legally defined (explained in the link) by familial proximity/age. So in your case, assuming your son is not married, does not have an adult child the NR will be the elder of you and your DH.

It's really important you understand your rights as NR and that aside from court order are not transferable - basically if the NR by age is your DH he has those rights but NOT you. That might be problematic if you are the main contact point for your son.

https://www.rethink.org/advice-and-information/living-with-mental-illness/treatment-and-support/social-care-assessment-under-the-care-act-2014/

https://www.mind.org.uk/information-support/legal-rights/nearest-relative/overview/

How did the BIM go Lowenna1469? I’m hoping you got the outcome you wanted.

Forcing a depot seems incredibly short sighted and ill considered in this situation.

In echo of Faith's post I hope the meeting went well today.

Obviously "well" is a relative term, especially in such a difficult situation, so rather I'm hoping that you came away feeling comfortable with the forward plan and with a better understanding of what was being proposed/agreed and why.