Woeful mental health care ...

Imperfect I truly feel for you. At least while DS is an inpatient you won't be waking up worrying about what he may be doing. I do hope you manage to use this time to get much-needed sleep.

Thank you Luckygirl and MissA - nice to come home to your words of support.

Well, the consultant should have been there today, but has been off sick and is returning on a phased return, so not available until tomorrow at earliest and that is still uncertain, though if it doesn't happen then, I shall start making a BIG FUSS!. As a stop gap, a duty dr will see DS1 today to check on how he is. His dad is visiting and has been told he can speak to him.

We have to remind ourselves that this is better than Nov 3rd which was the date given to DS1 last week for seeing a consultant. We are also fortunate that my DS2's partner is training to be a clinical psychologist and has been able to inform us about how some aspects of the system work and what his / our rights should be. We are going to try to organise an advocate for him through RETHINK if possible and between us will aim to attend all his consultancy appointments, Yup - terrier is about it now. What has upset me the most is that he needs a meds review because his medication males him sleep too much - 12/15 hours a day. So, he has slept through breakfast and lunch. They have a policy of not waking a patient in case they are violent, so he has missed meals by default. However, they also have a policy of not replacing missed meals so that patients don't use and abuse the system. Fair enough, but they could have been more aware and discerning as DS1 only had one meal yesterday and the day before and was not offered any replacements. If we hadn't been visiting this would have gone on!

I also know that NICE Guidelines state that when referred in crisis he had a right to see a consultant within 4 hours ...we are now heading towards 4 days so we won't let that go ...

Exhausting though!

Work went well - but simply info, info, info and a lot to absorb. I will sleep well tonight!

Just to echo what luckygirl said. Wishes and thoughts are with you. X

Good luck with the new job - what a time to start!

What is happening to our mental health services? - he has not even seen a consultant yet - that can't be right. What a worry for you.

You are clearly intelligent and articulate and can fight his corner. What happens to those families who do not have those assets on their side? Well done you for being such a terrier in your fight for his well-being - I do admire you.

Further update.

Sadly admission to an acute ward was badly handled - DS arrived on a very stressed evening when other patients had high needs and wasn't 'processed' properly or given due care.

Lots of phone calls and a very long visit yesterday to try to improve the situation for him - simply sad that everyone is so stressed and stretched within the services everywhere you turn.

We are hoping he will see a consultant either today or tomorrow. His dad is on standby for that.

I start a new job today - training first. Glad of the distraction really, but hard as I don't feel I can go to a brand new employer and say I have a crisis on my hands!

At least his dad is taking over with phone contact and visits today and DS understands I am 'busy'.

ONE DAY we will use this awful set of experiences in a positive way. It truly has been terrible and I can only be grateful that my son has people around him to support him. My heart breaks for the ones who do not.

But now - heigh ho and off to work I go ... xx

Thanks Maw. I do feel I am on a very steep learning curve. I read a lot of NICE recommendations yesterday and feel I am becoming more articulate about what it is reasonable to expect care-wise for DS.

You are right - it is good that he can articulate his anger / frustration. A lot of it is coming out in passive-aggression towards me so I am having to develop a bit of a skin to protect myself.

I will be off to do the weekly shop fairly shortly, while he still sleeps. He doesn't usually wake up fully until midday so this is my quiet time.

My 'go to' game is a card game of 'One handed patience' which DH taught me recently when we were on holiday. I could play it for hours!!! Trouble is , it does take both hands so not so easy when trying to juggle the phone ha ha! Takes my mind off things though xxx

Oh Imp how trying for you. If it is any consolation at least he is articulating his despair which I am sure is healthier than internalising it and looking as if everything is fine on the surface.
Waiting on the phone has to be one of the most exhausting non-activities there is (I often have a silly computer game open while I am waiting -Cookie Crunch is my current favourite - to pass the time.
I can only wish you continued patience and good luck.

Can't sleep. Achieved a lot yesterday. We are, by degrees, accelerating DS's referral. Phoned MH social worker again to ask if consultant could ring me directly rather than write with an appointment date. SW lovely and said she will see her to ask directly or email her ...will chase again tomorrow - today! I know we have to be persistent.

Have arranged further meds through Dr in London - complicated to change to a nominated chemist locally, but done so DS now has back up meds for another week.

Tried - without success - to contact CAB, ESA and P.A.L.S. - lots of waiting on phone to get through ...but will try again tomorrow.

Found out DS may be able to apply to Actor's Benevolent Fund if facing hardship later down the line - reassuring...

Really did spend nearly all day on the phone.

DS struggling - told me he keeps thinking about throwing himself off nearby bridge onto the motorway. I am not sleeping because I have this fear of him trying to leave the house - which I know is irrational really and he usually sleeps well at this part of the day, but I woke up with a start and heart racing just after midnight and cannot relax again. Had to check he is still there.

But, even though he is eating very little and not caring for himself in other ways, I have reasoned he actually is still fighting because he is angry. /it is comin gout in the wring ways and he is turning it inwards against himself, but he is still fighting. And we will go on fighting for him.

There seem to be so many of us, doing our best, that's what families do of course. One of me pet dislikes is the notion that five or six sessions of CBT will cure all ills. Hah

Well, what a rubbish place it is - chocolate and flowers needed all round me thinks. ...

GNHQ, we need a chocolate button!

I understand, am in same place x

Annie, thank you for your concern. I know the toll it is taking and am exercising self-care, but it is hard. I have talked to MIND and Drs receptionist today (she was really lovely and completely understanding which does make a difference) but fundamentally, we are in anguish which won't be relieved until his needs are better met. Ex H will share some of the burden by having him next weekend and into that week if needs be.

Thanks again xx - I am having a 'lunch hour off' from all the phoning! Trash TV, Gransnet and chocolate

Imperfect, I ache for you. Do take care of yourself , I speak from experience not self pity , years of worrying and battling take their toll . Take care please x

Thank you lam. Better out than in for me . Burning lavender to calm myself and clock watching until l can begin to ring people. At least he is asleep at the moment and l have been out for essential supplies. Do a little window of respite.

I've nothing to suggest as you're doing everything possible and your conclusion that mental health care is broken is correct.
I have work and personal experiences of mental health services, it's never been well enough resourced but the austerity agenda has decimated support services with the obvious result that crisis services have broken. The police are the only public service that can refuse to respond to threats of. Iolence, suicide etc. The police are stretched to breaking point. Sorry Imperfect, I'm grumbling and stating the obvious.
I hope your son gets some effective help. You must be exhausted, try and look after yourself. sending positive thoughts x

Another sleepless night. Just need to get this out somewhere ..

DS's case finally got escalated (slightly) he received a call from the mental health primary care team yesterday. He was too unwell to be able to answer the chirpy ' So how are you feeling ?' starter question. I spoke at length to the MH social worker who needed to assess him.
DH is not exercising self care, is increasingly depressed / anxious / angry / at risk of self-harm, is showing signs of schizophrenia, is constantly battling feeling suicidal, is writing suicidal messages on social media, ... He has 3 days of diazepam prescription left and the only 'plan' I have been given is 'take him back to emergency services if he needs more care.'
SW agreed he needs a meds review and would ' probably benefit from 1:1 therapy - we have been waiting for weeks knowing this. She will now write a report and it will be with a consultant in 2-3 days. The consultant will then write to invite him to an appointment.
'Will that be within the week?'
'Oh no, can't guarantee that - he is so busy.'

Brick wall....

Meanwhile his ESA claim has been rejected. Can't tell him - it would be a tipping point. Apparently he needs to be assessed for non-contributions based - we thought he had paid enough stamps in the last 2 years ... seems not.

MIND told me about P.A.L.S. - a patient advice and liaison service that I will contact today to see if we can bring any pressure to bear on MH services to move his case forward faster again. I also need to contact ESA and he needs an emergency Drs appointment for re-prescription of ordinary meds he needs to take. Plus I need advice on what next after diazepam at the weekend as he continues to deteriorate. So that's the day ahead mapped out - that and trying to make sure he at least eats something and takes his pills...

I feel that unless he actually attempts to take his life, no-one is going to do anything tangible to help him within the next 7 days at least.

I start a new job next week. I don't feel he can be left. I am stressed out and fighting the feeling of 'going under'. Ex H now looking at taking unpaid leave so he can take care of him. I feel like I am crying for help over and over and no-one is listening - so goodness only knows what this bright, beautiful, but very depressed young man is going through in his head. So much of this was avoidable.

Mental Health Care in this country is not just in crisis, it is broken.

Raising a glass of white to one and all - here's to a better night than last night GNetters x

I hope you get a quiet nights sleep imperfect you certainly deserve one. What a day, but you have had some success so well done. Only a mum eh? All good wishes. Sleep tightx

Update.

Well, after spending nearly the whole day on the phone, we finally got my DS to be treated as 'urgent' (well, relatively) and some one is phoning him tomorrow instead of Oct 9th.

Funny old day really - have learned a lot about local mental health, his doctor, legal rights, advocacy, counselling, patient representation (P.A.L.s) and benefit support through Mind ...

Also so pleased that his GF has come over some distance for an unexpected visit - she has a kind heart too.

So, drawing a breath and maybe I will sleep better tonight.

Heartsore is exactly it GA xx

Imperfect, sadly our family has had thirty years of involvement with mental health services and in that time we have made many representations to Primary Care Trusts, the government, MP's and direct care providers. Our experiences mirror yours in very many ways, but we are a family of activists and so knowledge is often, not power, but the key to being heard. If it's obvious that we have done our homework it means that at least we will be taken seriously enough to occasionally gain access to the decision makers.

After trying unsuccessfully (as a family) to get him help beforehand, my brother-in-law was once in crisis during the Christmas period. He was paranoid, delusional, hearing voices and terrified - he was acting bizarrely. When contacted by my father-in-law on Boxing Day the manager of the crisis team declined to take any action. I called the manager myself - and when he still refused to act I told him that the phone call was being recorded and would be used in evidence at the official Inquiry when my brother-in-law killed or harmed himself or somebody else, as seemed a very likely outcome at the time. The police and a social worker then turned up within an hour and my b-i-l was sectioned and in hospital for many months. I did make an official complaint and, with my parents-in-law, had a meeting with the head of the PCT to outline what had gone wrong and to ask for written evidence of actions taken by the PCT to ensure a similar situation wouldn't happen again. When there is an Inquiry after an incident of harm my father-in-law is now often invited to sit on the panel as a voice for Carers, he also helps to train Mental Health Professionals and is often a keynote speaker at MH conferences. (He's also just been nominated for a RCPsych Award - I'm very proud.)

I hate to hear of others, like you, who are battling with mental health services because I identify so much. If I were to write a book about our experiences it would read like a dystopian novel and I'm heartsore when I think how many people are struggling with the same issues.

GA I am impressed by your knowledge and it is facts and statistics that I feel I lack at the moment sand will need to gen up on to become more articulate in protest.

Simple things - a 'safe' place e.g. sideroom in A&E as someone with a disturbed mind doesn't need the extra stress of waiting in the main waiting room.

Just found out DS1's MH referral has been received. He has been sent a letter inviting him to a 'telephone triage' on Oct 9th. NOT appropriate. We already know his needs - urgent meds review and dialectical counselling. Now waiting on a phone call from his 'Primary Care Plus Team to ask for urgent appointment- told they may not phone today. Have gone back to drs surgery to ask him to bring pressure to bear for a face to face urgent appointment.

Have managed to stay very calm, measured and articulate, but so distressed and angry. What part of 'suicidal / angry episodes / breaking furniture / self-harm / neglecting self care / only able to take diazepam for a short time as a stop-gap, DOESN'T suggest 'urgent?'

Okay - big breaths and rant over ... So we wait for now. But thank goodness I am not at work and am able to give this time and chase and chase.

Priory clinics are well known for treating the mental health of celebrities, but did you know that 85% of the Priory’s services are publicly funded at a cost of appx. £650 per night? £159m was spent on placing patients in out-of-area beds in 2016-17, up 47% on £108m two years previously. In 2016-17, there were 5,876 mentally ill patients who had to travel out of their area for treatment.

My brother-in-law, who lives in Cornwall, has twice been sectioned in recent times and neither time was there a bed to be had in the whole of Cornwall, Somerset or Devon. Instead he was taken by private ambulance to the Priory Clinics in Bristol and Southampton respectively.

More money should be targeted to provide local services and NHS Trusts should stop paying lip-service to the needs of carers and actually do something more to support them.

Yes. The current assumption that community care is best needs to be challenged.

If we do want to start up some kind of pressure group on Gransnet I think we should begin with something of low cost. Because we know that the NHS is already short of money and have to choose their priorities.
Whatever the political rights and wrongs.
In theory, my first choice would be more provision for long-term hospital care, but in practise, this would be so expensive, it's not going to happen.