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 16^th 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 21^st 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?!