This is a guest post, written by Jane Lake.
Well, General Election time is almost upon us again in the UK, and alongside that comes the selection of “key issues” for debate. This time, mental health, particularly provision for young people, seems to have been chosen as one of the key issues to debate and parade. Initially, I felt this was positive, but the more I’ve considered the issue, the more disheartened I’ve become, because I can’t help but feel that highlighting the need to improve one area of the service only confirms my opinion that those in power have little idea of the current state of the service as a whole.
My first contact with Mental Health services was as a vulnerable seventeen year old, over twenty years ago. At that time, I have to say provision was good. I was appointed a CPN (Community Psychiatric Nurse) who would visit my home regularly, a few days a week at first, tapering down to once a week over around a two year period. My CPN would visit me in my home, and would provide invaluable support. In addition to this, I had access to a ‘drop in’ centre, which was open during office hours, and could contact a crisis team in emergencies. The same centre also ran several hobby and activity groups, for example walking, carpet bowls, a craft group. These sessions were staffed by support workers, and, often in the early days, a CPN as well. These groups were invaluable, as they provided a safe space for vulnerable individuals to interact and feel safe. At that time, they were my only social interaction outside my home and immediate family. In addition to this, there was provision for a support worker, which I took advantage of a couple of years after my diagnosis of clinical depression and anxiety, with mild social phobia, to help me interact with the wider community. My GP at that time also put a note on my medical record, stating that every effort should be made to find me an appointment as soon as one was requested.
My first experience of the cuts was when the social groups at the drop in centre gradually closed, one after another, as a result of therre not being a budget for staff to supervise them. My second was the loss of any fuel allowance for my support worker, which effectively meant that there was no point in my continuiing to see her, as the whole reason for my seeing her was to get out and about in my rural community. I discovered approximately four years ago that there was to be no more support worker provision for anyone I attended the groups with anymore, as a result of budget cuts. This included a young adult male, whose elderly and infirm parents were unable to take out because of their health, meaning that he would be completely isolated on a rural farm, with no real social interaction at all outside his immediate family.
Fast forward, then, to my most recent contact with mental health services, and the impact of decades of chipping away at the funds available to mental health services across the country becomes evident, and, frankly, bleak. The drop in centre, which at one time would’ve been my first port of call, had been closed down and sold off several years previously, so my first point of contact had to be through my GP. Because of huge demand and limited supply, it took about two weeks of daily phone calls by my partner to secure a GP appointment. On visiting my GP for a referral back to mental health services, I was informed that there was likely to be a 12 week waiting list until I could be seen by my mental health team. This, whilst longer than the six weeks I had found more typical in earlier years, wasn’t unexpected, and I had little option but to accept it, so accept it I did. I’m hugely fortunate in that I have an excellent support network within my family, but I did find myself wondering how seventeen year old me would’ve coped, facing such a long wait, alone.
My first contact with my mental health team, approximately thirteen weeks later, was very different to my expectations, which had been based on previous, long, experience. Almost the first words I heard from my CPN were “You get six sessions, maximum. It’s up to you whether you’d like to spread those out weekly, fortnightly, or monthly, but there is a maximum of six.” I will admit, I was slightly stunned for a moment, and was also completely unsure as to how best to split my appointments – in previous years, there had never been a mention of a set number of sessions, and I felt somewhat taken aback by the idea that, without any discussion of my current state of health or circumstances, I was being prescribed six sessions. It felt as though my, or, indeed anyone else who might need the services, actual situation wasn’t even relevant – six was the maximum, whether that was enough or not. This wasn’t a clinical decision based on a health assessment, but a bureaucratic law.
At my final session of six, spread out in the end over approximately three months, both myself and my CPN felt that I wasn’t really ready to be completely discharged, so my CPN suggested that I accept a referral for counselling services. I was warned that waiting lists are lengthy, but, again, with little other option, I accepted this. I eventually received an appointment for my first session nine months later. During this nine month waiting period, I had no contact whatsoever with either my GP or mental health team. This was due partly to my social phobia, which makes it difficult for me to request help at all, but was also very largely a result of not being able to get a GP appointment when I felt able to attend one; I can have the confidence one day, but not the next, and so calling back, day after day, just doesn’t really work out for me. I also felt as though I was overtaxing an already overworked system, in full knowledge that there was little my GP could do other than increase or change my medication, which I didn’t really feel would be helpful. I felt unworthy of asking for help, like a nuisance for continually calling, so I stopped calling. I stopped asking for help.
When I attended my first counselling session, I was informed that there was a maximum of fifteen sessions available per patient, but that as my therapist would be being relocated to a different area after twelve weeks, I would actually only be able to receive twelve. As it turned out, I attended nine sessions before, unfortunately, my therapist suffered a family bereavement, which meant a six week gap in treatment. It also meant that I only had one session available following the gap, due to the therapist being relocated. So rather than a fifteen week continuous course, I actually received ten split sessions from a foreshortened course of twelve. Another bureaucratic bit of nonsense, which declares ten sessions a course of therapy, meant that my therapist was unable to put me forward directly to see another counsellor, although he did very strongly suggest that I should go to my GP, explain the broken nature of my particular course, and request a re-referral for more counselling. Apparently this wouldn’t normally be an option, as each patient is only entitled to one course, but because my treatment had been affected by unusual circumstances, he hoped that my GP might consider a second referral.
And that is where I am now. Trying to get the courage together to face making and attending a GP appointment, to request a referral I might or might not get, that if I do get, will probably involve a huge waiting list. Other than my family, I have no support other than my GP. I have no crisis line, because I had my six sessions and was discharged.
But I consider myself fortunate, because at least I do have my family. I generally don’t go out, I exist probably 80% of the time in one room, my bedroom, because my social phobia makes it difficult for me to interact even with guests in my own home. I feel frustrated and sidelined, but I am not alone. What concerns me is that under the current system, those without their own support networks are, in my opinion, at extremely high risk of self harm and suicide. Waiting lists are long, treatment courses are short and not based upon clinical need. At the same time, we sufferers face ever increasing levels of scrutiny, both within the benefits system and from wider media, who seem to want to class anyone unable to work as a scrounger or basically worthless. As a depression sufferer, I already feel worthless a lot of the time, and without my support network, these factors in combination might well push me over the edge.
The mental health system doesn’t need a review, a rethink or scrutiny. What it needs is funding. What it needs is adequate staffing and resources to function as it should. The current system is unfair both on patients, or clients, or service users, or whatever the PC term is these days, and staff, who are expected to fulfill their extremely difficult roles with both hands effectively tied by bureaucracy and no budgets. We don’t need to look to the future and work out innovative new approaches – we need to look to the past, and employ the system we had, the system that worked so much better than the shambles we have now. Stop the rhetoric, the delay and the chat – and just open the purse strings! I feel that if this doesn’t happen, and soon, many will suffer, and lives may be lost, needlessly.
12 thoughts on “An open letter to the government about mental health services – Jane Lake”
Please thank Jane the author for having the courage to write – and so well.
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This is very valid, we are giving money hand over fist to other countries, yet neglecting our own, we also have problems with ‘legal highs’ and other narcotics which are responsible for psychotic issues, added to the equation, something that was covered on a First Aid course I was on last week.
It is about time we thought of our people and did something about it for the greater good of our people.
We also have a government that gives public money hand over fist to millionaires and rogue multinationals. Reverse that and come down on tax evasion, and we will have more than enough to fund our NHS and social care
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I would agree with that, but we also have big multinationals that seem to dictate what they will pay HMRC whereas those on PAYE haven’t got that option.
Having clever people who can exploit loopholes allows these companies to make big money. One of these companies in their US report stated their UK revenue six times what it stated to HMRC.
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This is a great piece and reflects mine and many others experiences.
Thank you, Jane.
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The concern about the health, of the mentally ill, took a nose dive, in the mid 80’s, very soon after MS renamed with the appalling moniker learning difficulties, was moved to care in the community, this experiment having failed spectacularly, the powers that be praised the deinstitutionalisation of LD care, and started to close the institutions which were doing excellent work, now there is not the required number of beds, MH sufferers are either being treated in prisons, or in a lot of cases either not at all or below optimum levels, because what the respective governments guilty of this crime, of care reduction, don’t understand is that care in the community more often than not means no care, because families frequently can not logistically mange the care, and the loss of services means there needs to be a massive increase in the number of nurses, to look after the same amount of patients.
This is very similar to the situation a friend of mine is in. No mental health services available for her incurable paranoid schizophrenia but because she’s not receiving the treatment that doesn’t exist and has limited to no access to the services which are there because of waiting lists and bureaucratic limitations on session allowances they tried to cut her PIP on the sole basis “she’s receiving no treatment so it can’t be THAT bad surely?”
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Yep. I have a dog and am not under CMHT (because they barely exist now) so all is well. Apparently.
But MH is important to May and co. parity of esteem and all that jazz…
She’d probably get a strong and stable in there right now, too.
Reblogged this on perfectlyfadeddelusions.