Tag: nhs

Body and mind

Shark bag
A picture of a shark rucksack looking anxious wih the caption “my face when people ask what happened to my arms”

*For the purpose of this post i’ll be using the word disabled to mean people with a physical impairment, I do consider mental health problems to be a disability but for clarity i’ll refer to mental health seperatly.

So my brain whirred into action last night thanks to an Instagram post by the amazing feeding of the fox. There’s a type of self harm that’s rarely mentioned; self neglect comes up in the context of depression but even I’ve never seen a discussion around the connection between disability or chronic illness and self harm or disabled people deliberately not taking care physical needs as a way of self harming. There are times when I say yes when I should say no, times when I will push myself because I don’t deserve to rest, times when I don’t take painkillers because it’s an indirect way of inflicting pain on myself, going to places that aren’t accessible or doing things when I’m not well enough.

Any disabled person will also tell you there is a big divide in the treatment of physical and mental health problems the two rarely mix and the mental health services are not always good at recognising the impact that physical disability or chronic illness can have on mental health or that the things that could benefit you mentally aren’t always possible physically (like going for a walk or having a bath), being told I should do more exercise after I’ve explained that I have chronic pain and chronic fatigue can result in me feeling lazy and making myself do things that result in pain or injury and an increase in fatigue and related symptoms. This is where the lack of understanding or knowledge of the connections between mental health and physical impairments is such a problem because for me it can be an increase in symptoms but for others it can be much worse.

Then there’s the other side the health services who treat your body as if your mind isn’t a part of it, although I’ve always been disabled to some extent in the last couple of years my mobility has got worse and I’ve been using mobility aids and dealing with more pain and fatigue.

At the beginning of 2017 I tried to access psychological therapy for long term health problems. I wanted help accepting my chronic illness and dealing with no longer being able to do the things I used to and things people my age can do, I wanted some support in balancing my physical health and mental health. It took several months for them to tell me that they don’t offer support for chronic pain, between that they rejected me because I was under mental health services (I was in the process of being discharged and they were completely different services), they then said my self harm made me too much of a risk and they said they didn’t think I’d be able to manage classroom based psychoeducation (thanks for that).

Last time I checked neither my body or my brain can function without the other yet services treating each are still very separate and mental health services are often not accommodating for people with physical impairments and often aren’t accessible there’s also an assumption that if you’re disabled and have mental health problems then of course you’re depressed because you’re disabled because who wouldn’t be?

Ableism unfortunately is still well rooted within the medical profession and the even within the disability communities there is still too much separation of physical impairment and mental health issues.

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Rocket Science

If you can’t here expecting a review of a lush  bathbomb then sorry to disappoint you this is a rant about mental health services, maybe try Lulu or Jen

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A blue rocket shaped bath bomb made by Lush cosmetics

I am not a frequent flyer, I don’t have air miles I haven’t been on a plane in years and the last time I went abroad was to Edinburgh by train. Despite this I and other in a similar are labelled frequent flyers or regular attenders (this is meant to be the better term) because we find ourselves in situations where our mental health has got to a point when we need support and intervention often requiring medical attention as a result of harming ourselves.

Self harm isn’t something people do for fun or because they enjoy being in a&e it’s because emotions become overwhelming (and this is a very simplified explanation of a complex issue) and as I’ve written before the treatment once you’re at a&e is often not pleasant or equal to the treatment of people going in for accidental injuries with long waits in loud and busy waiting areas and psych liaison who at most may give you a leaflet and discharge you at 4am with no way of getting home.

It’ll be no surprise that this latest rant is inspired by a crisis concordat meeting this morning, two hours of frustration at having to bite my tongue in frustration at the language used and throwaway comments about people with personality disorders and the triggering content in the suicide prevention information listing the age groups and sex of people who ended their life and details of methods chosen again separated by sex.

Sometimes I look at the people sitting around the same table as me and wonder how they can be so oblivious to the blatantly obvious, do they really not see the link between the high numbers of people in Richmond who come into contact with the street triage team and the above average number of people detained under section 136 of the mental health act and the complete lack of crisis services in the borough? Are they actually surprised that people who are distressed or in crisis don’t want to travel an hour or more to an area they may not know to get support? And may not have the means to do so? It really isn’t rocket science or a difficult connection to make, I don’t exactly consider myself the sharpest tool in the box yet I can see it so why can’t they?

Aside from Mind since I’ve been a part of the crisis concordat (around 2 years now) and the outcome based commissioning program (coming up for 8 months) only one person has actually asked me about my experiences of a&e and the treatment I receive it still seems like a radical idea to most of the people involved to actually listen to someone who’s been in the very situation they’re talking about. Despite feeling like i’m banging my head against a wall (thanks Steph) and frequently coming away wondering if being there serves any purpose I still keep going if only to play my own version of crisis bingo.

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All Roads Lead to A&E

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“If you’re struggling you can go to a&e”

“If you really need support go to a&e”

“There’s always a&e if you’re in crisis”

Have you ever sat in a busy a&e waiting area? I have, 35 times between January 2015 and now. It’s not much fun, long waits, uncomfortable seats and lots of sick people. Now think about sitting in that environment when you’re in extreme emotional distress, maybe feeling suicidal or wanting to harm yourself, it’s not a very nice environment at the best of times let alone when you’re in crisis.

Someone at a mental health crisis planning meeting recently said that everyone under a mental health service should have a detailed crisis plan drawn up in collaboration with them, their mental health team and carers/ family/ partner where appropriate; this seems like a sensible suggest except there are no crisis services. Mental health isn’t 9 – 5 people are more likely to be in crisis outside those hours when there are less things to do or people to see and when they’re more likely to be alone.

As I’ve said before I’m a regular at a&e a “frequent flyer” or “frequent attender” but I’ve never been pre crisis or because I want to hurt myself it’s always been afterwards. I’m used to it now I know the drill busy Drs and nurses on 12 hour shifts earning far too little don’t have the time, energy and often experience to sit down and talk about what’s wrong they often see stitching my arms up as an inconvenience when there are people who aren’t there because of self inflicted injuries. Sometimes I see the psych liaison which is more waiting usually on the “observation ward” a holding pen in a&e where people are dumped to avoid breaching the 4 hour rule, because there’s no a&e in my borough the psych team aren’t from my area or the services that operate in it, I’ve been discharged by the psych team in the early hours of the morning with no way of getting home and told to wait in reception until the buses start running, when I told them I was suicidal I was given a leaflet (it went in the bin as soon as I left).

When I was under a mental health team they’d let them know but now a letter gets sent to my GP and that’s it, no follow up, no further support, no one pretends I won’t be back again, my self harm has been described as chronic and not a concern because it’s been going on so long despite having permanent damage to my arms and recently a cut that took over a year to heal. I don’t see a&e as a place of support it’s not the appropriate place for people with mental health problems yet all over the country it’s the only option for so many people, the police and ambulance service are as frustrated by it as I am, although the police have some powers to take people to the minimal crisis services that exist the ambulance service has no option but to take people in crisis to a&e whether they want to go or not.

It may sound defeatist to say I’d only go to a&e after I self harm because I don’t see the point in going beforehand but the experiences I’ve had in a&e don’t feel supportive and often leave me feeling worse. At the last mental health crisis service meeting I attended a paramedic spoke about her frustration at not being able to take someone in distress to a more appropriate place than a&e, despite there being two crisis cafes and a crisis and recovery house covered by the mental health trust my borough comes under (though not actually located in my borough) only the police can actually take someone there the paramedics only option is to take someone to a&e whether they want to go or not.

A&e should be the last option not the only option it should only be considered after all other options have been exhausted or if someone needs medical attention it shouldn’t be a place people in distress are routinely sent to.

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Money money money

A paper collage of an open mouth screaming

I know I’ve talked about cost before and I do understand the pressures placed on the NHS however this isn’t just about the actual finances but the attitudes towards money being spent on mental health care. Last year when the mental health trust that covers my area was considering putting in a crisis café I went to a consultation which was for service users, mental health professionals, third sector workers and generally anyone that might be interested or might consider bidding on to run the service.

Someone else attending the event worked out how much it would cost per person per night to attend a crisis café based on the figures from the model that the trust were basing it on and asked whether this was good value for money. This frustrated me for so many reasons one of them being why are we looking whether someone’s life is a cost effective use of funds and another was that the alternative to me is self harm and a&e.

It costs the NHS money to treat me – stitches and anaesthetic, dressings, bandages, Doctors and nurses time and psych liaison, if I get an ambulance to take me there because of blood loss or not feeling physically able to get there alone it costs the health service money and although I don’t know the exact figures (and I’m not sure I’d want to as it increases the guilt) but I’m sure it’s a lot more than the cost of attending a crisis café. I’ve seen people say that if you do it to yourself you shouldn’t expect the NHS to pay to fix it and while I can think of a few things I’d like to these people I also think once you start going down the route of denying people treatment if they’re responsible for the cause I think it’s a slippery slope towards finding blame for almost anything (didn’t notice your laces were undone sorry your fault, broke your leg skiing should have stayed at home).

Prevention is almost always better then cure and while I’m under no illusion that crisis cafés or any other crisis support would mean that no one went to a&e; I know it wouldn’t mean I never self harm but it would be an alternative. There’s a lot of talk at the moment especially with an election coming up about mental health and in particular the mental health of young people. I volunteer on a youth mental health project and highly encourage mental health education and advice in schools but it doesn’t help the adults or children already experiencing mental health difficulties, it looks good on paper and even a liberal cynic like me can almost believe that’s not the only motive but it’s almost as if they want to write off those already in need of help and start again.

If we want people to thrive rather than just survive there needs to be more support, more money and more collaboration between the NHS and the third sector (actually collaboration not just expecting the third sector to pick up the pieces), the crisis concordat I’m part of has been cancelled twice in a row, it only meets every three months and the last one was in October there now won’t be another one until August. People with mental health problems deserve better and deserve more, too many people are left with nothing or sent home from a&e at 3 am with no way to get home, at this rate we cannot survive let alone thrive.

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Cost and sustainability

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A blackboard with “rant of the day” printed at the top and the letters NHS with pound signs drawn in white chalk

I had a list of things I wanted to blog about so instead I’m going to write about something completely different which came up few days ago.

I’ve been trying to get more into doing activitiesoutside of volunteering which uses my lived experience of having mental health problems, last week I attended a workshop on Outcomes Based Commissioning (OBC). I’ve learnt that mental health meetings and groups loves acronyms, an alphabet soup of conditions, job roles, legislation and projects.

I’d like to tell you more about exactly what that is but honestly I’m not entirely sure myself. I can tell you that 8 organisations some statutory such as the NHS and some charity are working together to change the delivery of mental health services in the area and somewhere in all this they’re looking for contribution and input from service users, carers and people with lived experience of mental distress.

One of aims from the mental health service is to ensure sustainability and deliver cost effective treatment, I have a couple of issues with this. 1) you cannot guarantee sustainability, you can do your best the make services sustainable but don’t make false promises especially to vulnerable people, 2) cost, now unless you’ve been living under a rock you’ll know that the NHS is chronically underfunded and overstretched; mental health has always been refereed to as the Cinderella service and when the going gets tough the tough gets cutting and mental health is often one of the first areas to feel these cuts.

So what’s the problem with pointing this out or looking to save money? well mental health already comes with a nice big serving of guilt for many people, guilt for putting pressure on loved ones, guilt for not working, guilt for being unreliable and it’s hard not to feel the need to justify the cost of treatment as I wrote in my last post I’ve been told by Drs in a&e to consider how long it took to treat me compared to the time it took me to cut myself, I’ve been questioned on why I called an ambulance despite feeling faint from blood loss. I didn’t choose to have mental health problems, my actions may be my choice but having these issues is something beyond my control.

Having the cost of treatment pointed out or hearing the providers talk about services being cost effective makes people feel guilty for something they can’t help and even puts people off seeking treatment whether that’s for self harm (I know people who will suture or glue themselves) or more long term treatment like psychotherapy or counselling.

The financial situation with the health service is complex but nobody should be made to feel guilty for needing healthcare or social care or feel they don’t deserve the help they need.

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Dear Dr (a message to Healthcare professionals treating self harmers in hospital)

I’m a regular in my local, that probably doesn’t sound unusual or uncommon except I don’t mean my local pub I mean my local a&e department. Like around 1 in 4 people in the U.K. I have mental health problems and often require medical attention for self harm, I decided to write a post about my experiences in a&e as an open letter to medical professionals.

A collage picture of a wolf howling with song lyrics “Lately it’s hard to let you know that I’ll never learn” above and below

Dear Dr or health care professional

The NHS is underfunded and over stretched, you work long hours in a challenging conditions often with little thanks or support; it’s impossible to be oblivious to the current state of our health care system. When you’re juggling patients and trying to be in 3 places at once it’s not hard to understand why you might not want to spend an hour or more treating someone for self inflicted injuries especially when you’re coming to the end of a long shift; however you chose a career helping people and taking care of their medical needs and I am a person in need of medical attention.

If you’ve never experienced a mental health problem or felt a need to harm yourself then I don’t expect you to understand how I feel or why I do what I do but the way I got my injuries doesn’t change the way they should be treated. I’ve been treated in ways I can’t imagine people who are there after an accident would be. 
I’ve had wounds washed out in a sink in front of all the other cubicles and taken from one part of the department to another with nothing covering my arm while people stare at me often horrified, on one occasion my arm was covered so it wouldn’t scare the children in the paediatric a&e. 

I’ve been stapled with no local anaesthetic and told it’s fine because it doesn’t hurt (it does), I know this is in partly due to guidelines but I’ve also had malicious treatment where one Dr repeatedly pulled the Staples out and re did them all the while telling me if I didn’t stop I’d lose my arm while I sat in bed crying. I’ve had Drs tell me to think about how long it took them to treat me compared to the time it took me to hurt myself and when I’ve felt faint from blood loss and said I need to sit down told I can wait a couple of minutes. 

In my a&e notes it says most of the time that I’m not distressed or that I was making eye contact; apparently that means I’m fine. My mental state is frequently being judged as fine because I’m not shouting or being abusive or absconding however on times when I have been visibly upset I’m ignored.

I know accident and emergency staff are there to treat my physical injuries and leave the psychological side of things to the psych liaison but please remember that attached to the arm you’re treating is a person, I know my cuts can be deep and you may need another opinion but I’m not an exhibition for everyone to come and have a good look and discuss the damaged I’ve done, I see the signs that talk about dignity privacy and respect yet that doesn’t seem to apply if you’re a mental health patient; a little discretion wouldn’t hurt.

This isn’t intended as a criticism of the NHS I know I’d be dead without it but I didn’t choose to be this way, it’s something I’ve not been able to break away from despite treatment and no amount of snapping elastic bands of holding ice cubes has ever replaced it as a coping mechanism.

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Service user involvement and mental health awareness

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A picture of me wearing a sparkly maroon jumper and gold star necklace with a floral lanyard around my neck, I am holding a piece of paper and talking into a microphone.

I’ve been volunteering for just over four years, this was a speech I gave at the 2016 Annual general meeting (AGM).

One of the things that appealed to me when deciding to become a volunteer was being able to use my lived experience to benefit myself and others and the importance placed on the voice of service users. I’d been a group member in the Peer Support groups for a while but had never considered or planned to get involved in mental health in any capacity other than being a service user or patient, before joining the groups I’d never seen any benefit to having a mental health problem after all my experience had just brought me trauma, disappointment and more prescriptions for psychiatric medication than I can count.

Over the past four years I’ve progressed as a volunteer across different projects and areas of the charity and have used my lived experience as a Peer Support Volunteer, Youth Wellbeing Volunteer and by becoming more active with service user involvement being able to speak on behalf of people with mental health problems in the area. I’ve been a part of the local crisis concordat group for a year now looking at the way crisis services are delivered and how they can be improved I’ve also attended the changing minds festival at the Southbank centre, been part or research into unmet needs in the borough and sat on a panel talking about mental health and art.

Service user involvement is often under-represented and many people don’t realise that their views and opinions are not just important but needed and aren’t aware that these opportunities to talk about their lives exist. People with experience of mental health problems and those who have used services whether NHS, charity or support groups are known as experts by experience for good reason because no one knows us or our needs better than we do something which goes for everyone not just people with a mental health problem or a certain diagnosis.

Another project I’ve been working with is the mental health awareness workshops with the volunteer coordinator, this is a training programme offered to organisations wishing to boost levels of mental health awareness in their workplace. So far I’ve told my personal story to two groups of people with English as an additional language many of whom also struggle with their own mental health difficulties and were able to discuss this after I talked about my problems.

I was recently described as “very articulate” and told I could “probably talk my way out of any situation” aside from possibly being the best description of me ever it’s what motivates me to continue to do the things I do. In January I’ll be co-delivering part of the mental health awareness training and talking about myths and misconceptions surrounding mental health and I plan to use my skills to raise awareness and do what I can to improve and influence mental health services not just for my benefit but for the benefit of all the people who aren’t able to be as involved as I am. On the days where my mental health is getting me down or I feel angry and frustrated because of my issues I try to think of all the things I’ve done over the past few years the experiences I’ve had and people I’ve met none of which would have happened if I didn’t have a mental health problem.

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