What Do You Do When The NHS Gives Up On You?

I’ve had ME for 14.5 years, depression for 8 years and an anxiety disorder for nearly 8 months. The NHS are currently in the process of giving up on treating me for the third time. I’d love to say this is a one off. That I’m the only person this has happened to. But, alas, I cannot because that would be a great big fat lie! The more I talk to people with the same or similar conditions to me, the more stories I hear of professionals just giving up on them and no longer offering treatment. Here’s my story of how they’ve given up on me.

The first time I was given up on started when I was 9 when I came down with a terrible cold that was verging on flu in its severity. I never fully recovered from it. I was ill and off school for a couple of months with no energy, headaches, tummy aches and lack of concentration. I went to the doctors but no one knew what was wrong. I had blood tests for coeliac disease and glandular fever, my thyroid was tested, my iron levels were checked, but all of my tests came back clear. I went back to school and functioned normally again and a few months later I was left with no energy, unable to attend school or do much at all. I was a keen ballet dancer but after an hour’s class I was left barely able to move for the next few days and no one had a clue why. I was sent to a paediatrician who sent me for a psychiatric evaluation to see if I was making it up or had a somatic disorder but after an hour of questioning I was deemed to be telling the truth and having physical symptoms that no one could explain. This all went on for a year until I was finally sent to a specialist in London. He diagnosed me with ME/CFS and that was that. We were informed that there was no cure, no reliable treatment, and nothing really that they could advise other than pace myself or I’d continue to relapse and could relapse to the point of being bedridden or even hospitalised. After that I was sent home and told to get in touch with a couple of ME/CFS charities and basically to hope for the best.

Periodically over the years since then I’ve been back to the doctors about various symptoms caused by the ME and every now and again I got sent to a paediatrician or an occupational therapist or a psychologist (to be assessed again because they thought my low attendance at school was because I was school phobic) but I’ve never had any actual treatment and was just told to do my best to manage the condition. The NHS recommends Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), though these are highly controversial within the ME/CFS community, but I was never offered these and the closest I ever got was my paediatrician spending 10 minutes drawing a diagram of a staircase and explaining that I needed to become completely able to do the set level of exercise on one step before I made a very small increase to the next and so on or I’d relapse. After the age of 13 I was just left to get on with it, I was practically wheelchair-bound for three years but only got seen by doctors when I needed medical letters as evidence for exam arrangements at school, college and uni. They never even attempted to treat me or any of my symptoms after that.

The second time was years later. I got depression two and a half weeks before my 16th birthday. After a battle with my GP I was referred to CAMHS and put straight on antidepressants with no offer of therapy. I spent the next year deteriorating whilst seeing a specialist nurse weekly or fortnightly and told that I was getting better each week despite getting worse. The medication didn’t help so they put me on a new one and just left me on it for 4 weeks with no check-up or warning that it might make me worse or even suicidal. Those 4 weeks were terrible and made me significantly worse and intensely suicidal. I stopped taking the drugs and got in a lot of trouble with family and my nurse and doctor because I hadn’t done as I was told but I honestly don’t know that I’d still be here if I had continued taking them. They completely altered my mind!

As you may have read in my previous blog post “Mental Illness – The Next Generation”, I then got treatment privately both as an inpatient for 9 weeks and then an outpatient for a few months. Funding ran out and I still needed treatment so I went back to the NHS and got sent to the Adult Services as I was now 18. I was assessed and told I could have Group CBT for 6 weeks. I gave that a go but as I was so much younger than all of the other group members it wasn’t suitable and the group leader said that it wouldn’t help me. I went back for assessment and was told I could have 6 sessions of individual CBT. Bearing in mind I’d spent 9 weeks having intensive group CBT 5 days a week for 9 weeks which hadn’t fixed the problem, this didn’t seem like a helpful option. I was then assessed by another psychiatrist for medication and he said that now I’d tried 5 different antidepressants and found none to be helpful and two that made me much worse, there was very little they could do as I had medication-resistant depression. I was then discharged and told to do my best to keep my negative thoughts at bay and eat well and exercise regularly (well-known cures for depression…. Wait, no they’re not!).

So that was the second time the NHS gave up on me which brings us up to now. Seemingly they’ve exhausted all of the options that they’re prepared to try and I’m now pretty much being left to it. I’ve been reliably informed by my psychiatrist that most patients with anxiety disorders “get themselves better eventually” however, I’ve been given no time frame and the only advice he left me with was to keep pushing and challenging myself. I’d like to point out here that I’ve been doing this for the last 7 months with very little effect.

I knew as soon as I started feeling anxious that I needed treatment and quickly. Something felt terribly wrong and I sensed that I wouldn’t be able to pull myself out of it so after having a terrible panic attack before work on Friday 21st March and struggling to function over that weekend I got an appointment with my GP on the Monday knowing full well that I needed medication. I worked as a nursing assistant at a local psychiatric inpatient unit and am also a psychology graduate so I’m well versed in the medications on offer and the treatments that do and don’t have an effect. My GP offered me Citalopram or Sertraline, both are SSRI anti-depressants, both are drugs I’ve been on before, both made me very ill when I was previously prescribed them. Citalopram made me physically unwell and side effects included stomach ache, vomiting and sedation. Sertraline massively increased my suicidal ideation so much so that I was no longer able to guarantee my own safety and I came off it. I stated these facts to my GP and asked to be prescribed a different drug that I’d not been on before given that I’d only been on 5 out of a list of over 60! I was told that those were my only two options because they’re first-line treatments and so I went with Citalopram. 6 weeks down the line and I was pretty much housebound and suffering terrible side effects that weren’t going away so I was switched to another drug which was even worse. I’ll do another blog post in the future that goes more in depth into the world of antidepressant medication.

Anyway, after begging my GP to refer me to a psychiatrist and her almost refusing because she didn’t think I needed one, I was finally sent to see one and I thought that I was going to get better. He was shocked that my GP had kept me on the medication I was on and said that the drug was “basically poisoning” me and started reducing it straight away and then put me on Pregabalin, an anti-anxiety drug. Since then not a lot has changed. I’m less physically unwell but am still having side effects that dramatically affect my daily functioning. I’ve asked and asked for therapy and was told that I’d finally be sent for an assessment but my psychiatrist has informed me that the therapy I need is very rarely offered because of funding issues and that they’ll almost certainly say no. There has been no mention of any change in medication because there’s nothing else they think will help and all I’m being offered is a 6-week course of Group CBT. I have to take diazepam (valium) in order to get to my psychiatry appointments because I’m so terrified of leaving my flat and last time I missed my appointment because I was having such a severe panic attack that I couldn’t walk or move let alone leave the flat. Going out and sitting on my own in a strange room with complete strangers and talking about anxiety is pretty much as anxiety-provoking as it gets for me at the moment and given that CBT hasn’t helped me in the past, it’s really not an appropriate option. I’ve explained this at every appointment and during every phone call with my psychiatrist because he suggests it every time he’s in contact with me and yet that’s the only option they’re giving me. I should be getting an appointment through for next month which I was told was to be assessed for individual therapy but I’ve now found out that the Group Treatment Programme Service are going to be there too so it’ll be their last–ditch attempt to persuade me to do Group CBT. Following this, they’ll almost certainly discharge me because they’ll spin it that I’m refusing treatment rather than the actual reason which is that they’re not offering me any treatment that I’m well enough to attend. I’m not deemed a good bet for giving therapy to because I’ve not been “cured” by it in the past and I was outright told that the allocation process is based on who is most likely to improve the quickest and that’s clearly not going to be me. I’ll keep you all posted on the outcome of the assessment in December that I’m desperately hoping medication will enable me to attend, but it’s not looking hopeful. Given just how many times my psychiatrist reiterated that most patients with anxiety disorders get themselves better, it’s clear that this is what he’s expecting will happen as he doesn’t think I’m going to be offered any further treatment.

All I’m left wondering is What Do You Do When The NHS Gives Up On You?!

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11 comments

  1. Reblogged this on Anxious Accessories and commented:
    I’m sorry to hear that you are struggling with your medication 😦 We’re really lucky in Australia – We’ve just hit the PBS cap and so our medication for the rest of the year is practically free – It’s only six weeks, but at least it’s six weeks of medication I don’t have to stress about 🙂

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    1. Thanks so much for reading and for reblogging!!!! I’ve never been reblogged before! That’s nice that your medication is currently so cheap. I’m paying at least £17 a month but regularly get extra stuff added on which then bumps the price up. It’s not cheap being ill!!! x

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      1. Yeah, Australia is really lucky – we have the PBS Scheme, which means if you are on Centrelink (welfare) you can get most medications for $6. Once you pay about $300 in any one year, the medication becomes free. Our government is soon in introduce a co-payment on seeing a doctor (currently free but will be about $7 – per person, per visit) which is going to screw over most concession card holders… The only reason we can go to the doctor is because it is free and having to pay $7 every time you go is just stupid… Sometimes we have 3-4 GP visits in one week which means it might cost us over $30 a week just to go to the doctor… It’s insane!

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      2. Have you tried applying for help with health costs? There’s a form you can fill out and if you’re on low income then you get your prescriptions free, you can claim travel expenses and any other costs you may encounter. You probably know about it – but thought I’d share just in case! 🙂

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      3. Thanks Emma, I’m looking into it at the moment to see if we can get cheaper prescriptions. Thanks for sharing and for reading my blog! xxx

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  2. That’s awful! We’re very lucky here in the UK that our health service is free and I really can’t fault it for physical health problems. You get seen the day you phone up as long as you wake up at the crack of dawn to call them and they’re really good however they’re pretty useless for mental health as you read in my post. Our current government promised to introduce a parity for mental health and physical health and yet all they’ve done over the past few years is cut funding to mental health services despite it being the biggest cause of days off sick from work and one of the most increasing types of condition. We’ve got an election coming up next year so they’re all now making outlandish claims that they’re each going to sort it all out and that they’ll put in maximum waiting times for first cases of psychosis like they have here for possible cancer patients but all of it’s rubbish and will almost certainly never happen because it involves funding! x

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  3. Unfortunately, I know a little of how you feel. I was diagnosed with severe anxiety just over a year ago and it still feels like I’m being humoured. My university counselor made the initial suggestion, a counselling charity I was lucky enough to find agreed with them – when I went to the GP, she agreed with them, but it was almost like “Oh, okay then – and what do you want me to do about it?” I was finally put on medication 11 months ago, but what I really need is counselling – not CBT because I KNOW that doesn’t work for me, and the NHS will only offer six weeks at a time. My uni advised me not to even bother with their six week block because, and I quote “opening everything up and then abandoning you after six sessions is just going to f*** you up even more”. So it’s six weeks of CBT on the NHS or spending money I don’t have for private treatment. Still, I suppose we can always try cheering up and getting exercise – apparently that seems to work!

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    1. I’m so sorry you’re going through the same thing! You’re yet another person who is not being helped by the system and it’s just awful. Thanks so much for being so open. I feel exactly the same about 6-week therapy courses. 6 weeks is more than enough time to open up lots of boxes of your deepest darkest issues and then they just leave you. Having gone through that more than once myself I know it left me feeling so much worse than I would’ve felt if I hadn’t started. I will be writing future posts about the financial benefit that paying for full and proper treatment for mentally ill people will bring to our country because I fundamentally believe that it would be cheaper to treat us and have us back at work paying taxes than have us on sick pay, benefits, having numerous appointments with psychiatrists who are paid a fortune, having prescription costs subsidised etc for potentially the rest of our lives. That’s not even mentioning how much it costs to give a person inpatient treatment. I’ve been informed on numerous occasions of the benefits of just cheering up and trying not to be anxious. If only I were bright enough to have thought of that I’d have been cured months ago! If only all those people with diabetes just believed in their pancreases I’m sure they’d start processing sugar properly again. How silly we all must be! Much love to you and thanks so much for reading, commenting and sharing your story, it’s much appreciated! xxx

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  4. Your post really resonates with me. I’m now phobic about NHS MH docs because they have been so inept and unfeeling. I found a great psychiatrist though privately through Nuffield and I see him once or twice a year. There are a few out there. He put me on phenelzine, an MAOI that most docs avoid. It’s worked for me. He understood immediately that I react badly to SSRIs. As for therapy? I see a counsellor for the basic rants and steam valve release. The rest I do for myself. I wish you luck.

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    1. Sorry this resonates with you. I’m glad you’re getting the help you need privately though. I wish you luck too and thanks so much for reading and taking the time to comment! x

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  5. Sorry to hear I’m not the only one to struggle with the NHS. My advice. Find a private shrink through Nuffield. Try an MAOI anti depressant. Go to see a counsellor privately. Good luck.

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