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Matt Sloan

Ghosting My Therapist: My Experience With NHS Mental Health Services

Living in the United Kingdom has its benefits, chief of which would be the free health care offered by the National Health Service (NHS). I don’t have to worry about health insurance (unless I want to seek private health care, more on that later). I don’t have to worry if I have an emergency, as any surgery or other treatment is free. Prescription medication, routine scans, therapy — everything is free for me, and I feel incredibly privileged to have access to free health care. However, this comes with limitations that some may not consider — limitations that led to ghosting my therapist. I’m not proud of it. I know I could’ve handled the situation better, and I am in no way advocating for this method of “breaking up with a therapist.” However, what happened reveals the reality of millions of people living in the U.K. Private therapy (and private health care, in general) will always be a stronger option for those who can afford it. To begin, here’s a little context on how therapy works through the health service. After the initial round of speaking to a doctor, I was referred to the community mental health team (CMHT) for assessment through a psychiatrist. Then, a referral is made for therapy, prescriptions are written, and you’re left to figure it all out from there. Then comes the waiting game. According to data released by the Royal College of Psychiatrists in 2020, two-fifths of patients waiting for mental health treatment were forced to resort to emergency or crisis services. They also found that of those on a hidden waiting list — that is, the wait between referral and second appointments — “nearly two-thirds (64%) wait more than four weeks between their initial assessment and second appointment. One in four (23%) wait more than three months and one-in-nine (11%) wait longer than six months.” The COVID-19 pandemic only made matters worse. The NHS reached record referral numbers in 2021, with millions still awaiting treatment. A staff shortage is partially to blame, as noted by eating disorder charity Beat: “Only 61% of urgent cases have been treated within the one-week target, and just 67% of routine cases were treated within the four-week target. 12,457 children and young people began treatment between April 2021 and March 2022 … that number has more than doubled post-pandemic. 1,946 children and young people were still waiting for treatment at the end of March 2022, which is almost 3.5 times more than March 2020. 39% of children and young people who were still waiting for treatment by late December, had already waited over 3 months.” Waiting times aside, I was lucky to have an NHS therapist at the beginning of the pandemic, whom I saw every two weeks for over a year. She helped me begin to come to terms with a number of things, including my realization that I had been sexually abused and had been burying my mother’s emotional abuse. However, as is often the case with NHS therapy, it was increasingly clear I had outstayed my welcome regardless of how much work I still had to do. I had these huge discoveries dumped on me, then I was left to my own devices. In our last sessions, my therapist hinted at the pressure they were under to wrap up long-term patients. Our sessions also became shorter — while they were meant to take a full hour, they sometimes finished after only 30 minutes despite having more to say and more work to be done. I was too anxious to say anything, though. I often avoid things that make me feel anxious. Then came the final session, when my therapist uttered the words I’ll never forget: “This can’t go on forever, you know — our sessions.” Believe me, I know they couldn’t. I know there comes an endpoint to therapy for many, though there’s something to be said for continued maintenance therapy when you’re “living well.” But I wasn’t living well; I was still struggling, still trying to navigate the messiness of my life in the midst of a pandemic, still trying to comfort my inner child who was hurting so much. I knew the next session would be more of the same. I felt humiliated. I was afraid of the “ending,” so I didn’t go. I ignored the phone calls. A letter arrived with another appointment, and I avoided it too. I didn’t even open the discharge letter when it arrived. On the NHS, you’re often discharged if you miss more than two appointments without an adequate reason. This is the reality for millions seeking therapy through the NHS. Between six and 12 sessions are usually offered, each an hour in length. While this may be enough for mild, everyday struggles, more complex struggles can take years to overcome. I’ve seen this play out through others; my partner, who lives with complex PTSD, was only offered 20 weeks through the NHS before she was discharged. She has since sought private trauma therapy, with which there is no deadline — no maximum time period within which she must recover from decades of abuse, or else. Through personal experience, many NHS therapists only offer CBT or similar modalities; I have personally yet to find an NHS therapist able to offer more complex treatments such as eye movement desensitization and reprocessing (EMDR). The NHS has the potential to really help people, but only with meaningful and sustainable investment. The fact is that, while we are lucky to have the NHS, mental health services in the U.K. have long been understaffed and underfunded by successive Conservative-led governments. As noted by Trades Union Congress (TUC), the UK Conservative party “have pursued a self-defeating policy of austerity that has hampered our economic recovery and left large parts of our essential public services at breaking point.” Years of spending cuts have left our health services unable to cope with growing demand from vulnerable people while also remaining chronically understaffed. As Mind.org.uk notes, 41% of mental health trusts have staffing levels below established benchmarks. The NHS has the potential to really help people, but only with, as TUC says, meaningful and sustainable investment in not only our mental health services but across the whole of the NHS. Given everything, I believe I’ve had my fill of NHS mental health services beyond psychiatric support and medication. I’ve been left wanting each and every time I’ve pursued NHS therapy, and it’s exhausting to have to go through one’s history with each new person when I could find a private therapist. At least, then, I won’t be afraid that they will one day end my treatment due to inadequate funding. Compared to some others, I’ve honestly been quite fortunate in my experience, too; I haven’t had quite as long a wait as some people, and I’ve had reasonably good therapists, for the most part. I’m lucky that I am also in a position to be able to afford private therapy, though only barely and through sacrifice in other areas. I don’t take it for granted, though. I know there are millions of people out there without any other choice but to remain on NHS waiting lists, only to be given the most basic of services and then released into the wild without the tools necessary for survival.

Megan Potts

Why I'm Scared About UK Health Care After the Elections

When it was announced we would be called to the polls in the United Kingdom once more, this time on December 12, I felt the usual irritation about an unplanned election being called. Still, I realized the importance of this election. It was certainly the most important election in my lifetime so far. The next thing to cross my mind was that this election was four years to the day since my experience of sexual assault that left me with post-traumatic stress disorder (PTSD). There was the dread. Historically, this date has been one of trauma for me. Was it possible that four years after being assaulted, I would witness the electorate handing a majority of seats to a party that seemingly wants to destroy the service I rely on to help me manage my PTS D and other mental health conditions? Suddenly, I was terrified for our National Health Service (NHS). Along came December 12. I voted for the only party my conscience would allow me to vote for. I cautiously hoped for change. I was aware of the dangers of living in an echo chamber, so while I was hoping for change, I refused to rely on it. When 10 p.m. rolled around, I hesitantly turned on the news. The polls had closed. Ballot boxes were being taken to count centers. The exit polls had been announced, and they weren’t looking good. The race was on. As constituencies began to declare, I dared to feel a glimmer of hope. Maybe change stood a chance, after all? It was 4 a.m. before my constituency was declared. I’d seen Northern Ireland’s largest party lose seats, and in other constituencies, their majority had shrunk considerably. Was it possible? Was our MP of 22 years about to be given his marching orders? No. He wasn’t. And yet, my constituency had still shown its capability to change — his majority had shrunk to roughly 6,000 votes. At this point, I took myself to bed. This country I call home, that I’d believed was incapable of change, was indeed changing. And then the notification came through. The notification that brought me crashing back to earth, and filled me with fear. The Conservatives had their majority. The NHS wasn’t safe. While Northern Ireland had made great strides forward, England had receded several years. Suddenly, Northern Ireland looked progressive. I cried. I’m currently on a two-year waiting list for dialectical behavior therapy (DBT) following a new diagnosis of borderline personality disorder (BPD). A diagnosis I’d fought for six years to get, long enough that treatment was no longer readily available through our rapidly collapsing NHS. Now, I have to brace myself for the possibility that I might get to the end of the two-year wait only to be told I can no longer get DBT on the NHS at all. I have to start planning for what I’ll do if we find ourselves with American-style healthcare. If insurers consider mental illness a preexisting condition, that renders people uninsurable. A party who by no means has a good track record of caring for those with disabilities or living in poverty now holds a majority, and those of us who were already fighting to stay alive are preparing for battle. It could be five years or more before the country has the chance to rectify this. We are scared.

How Kindness Has Been an Overwhelming Theme in My EDS Journey

I’m lucky to be here. I remember waking up in the ICU and after that awful tube was removed from my throat, like a reverse “facehugger,” a national health service (NHS) nurse asked me if I had a picture of the newborn daughter I had been suddenly separated from a day after her birth. It wasn’t long before two precious polaroids of the healthy girl who had quite literally broken the mold were in my hands. I may have forgotten that nurse’s face, but I’ll never forget her kindness. Back in 2008, they had no idea why things went so badly wrong after labor. No one had yet put those pieces together. It wasn’t until 2012 that my body decided to try and tell me its truth. A sudden onset of symptoms on a hot day at a kid’s party sent me to my doctor and eventually to a neurologist who ruled out multiple sclerosis (MS). I have friends with MS. I know the symptoms and mine were ticking all those boxes. I’m so grateful for the sympathetic, experienced members of a particular MS forum, all the kind thoughts and best wishes and encouragement to fight my way through the pre-diagnosis “limboland.” When I was diagnosed with functional neurological disorder and chronic fatigue syndrome, I found yet more gentle, encouraging, supportive voices that urged me onward to seek answers. To ask for help, to embolden myself enough to make myself heard and understood. My doctor is my staunch ally, taking my focussed research seriously as my sincere desire to help myself, with his educated guidance. A chance word from an orthotics specialist threw the word “hypermobile” into my self-descriptive medical vocabulary. Suddenly, those dots practically joined themselves and when I took printouts of the NHS’ own pages on joint hypermobility syndrome and Ehlers-Danlos syndrome to my doctor, and he said that it looked like we were finally getting somewhere. My body gave up more clues. My mobility and balance reduced, mild digestive issues appeared, dizziness and a thumping heart worsened, cognitive issues, paresthesias and spinal problems had me asking medical professionals and forum members for help and clarification. I was diagnosed with hypermobile Elhers-Danlos syndrome (hEDS) at the age of 41. In my day to day life, the mummy (and daddy) friends I’d made courtesy of my daughter’s existence, saw my struggles and lent an ear, gave me lifts, took me for coffee and extended their kindnesses to me and my family. As I began to open up about my struggles, preferring to deal with them by talking about them, friends and neighbors opened up to me in return. I learned that some were dealing with chronic fatigue syndrome, fibro, MS, lupus and hypermobility spectrum disorders. I would never have known if I had not allowed myself to be vulnerably open and honest. In return, I’ve been able to lend an ear, direct them to sources of help and aid their diagnosis journeys. My second-hand mobility scooter conked out. I was unable to afford another as the UK benefits system is not very understanding when it comes to variable, often invisible disabilities and chronic illnesses. So once again, I breathed deep and called for help. A friend had inherited a practically new scooter but themselves needed the money, so I set up a Crowdfunder. It didn’t take long to generate the funds. And bless my parents, they bought me a folding scooter garage to help keep it in good condition. I am incredibly grateful for the kindness of friends and strangers alike. People I’ll likely never meet have donated their time, money and the 20 units of blood that kept me alive. Thank you all so very much. Although hypermobile Ehlers-Danlos Syndrome and all its groupie diagnoses are challenging and disabling to live with, it has inspired so much kindness in others and grown compassion in me. The very least I can do is pay it forward with a listening ear, an encouraging word, a supportive post. My body may be glitchy, but it is ultimately doing a great, kind service to my ever-developing spirit. Follow this journey here. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: yavdat

The Costs of Being Chronically Ill in the UK With the NHS

I know it is a little crass and probably the reason why it is the unspoken cost, but lets talk about money — cold, hard, cash. No one ever really talks about the monetary cost of being ill. Of course if you have an acute illness then this cost is at most the cost of a prescription or some over-the-counter medication and possibly a couple of days of lost work, if you are self-employed or don’t have sick pay. But what are the costs of being permanently unwell? Ask anyone who is chronically ill, from cancer to rare diseases – being ill is very expensive. The emotional costs of being chronically ill are well documented, from stress and depression that an illness can cause, to the breakdown of relationships. I want to focus on the monetary costs of being ill – even in the UK. Here in the UK we are amazingly lucky. We have probably the best “access to all” healthcare system in the world. In a nutshell, we have free access to doctors, consultants, nurses, emergency medicine, scheduled operations, treatments and massively subsidized medication costs. The current cost for a UK prescription as of April 2017, is £8.60. This is amazing when I know that many of my regular medication cost over £100 a month, and I am on eight different prescription medications a month. Not all medication are this inexpensive. I trialled a particular tablet last year for a few months that cost over £600 a month. Whilst we all contribute towards the costs of the NHS in terms of national insurance and tax contributions, I do think the NHS is massively under appreciated. If I lived in a country where I had had to pay for my healthcare treatments, my hospital costs alone would have totaled over£100,000 – I know this because I have access to private healthcare through myemployment, so I see every medical bill. You might very rightly point out at this stage that other than prescription charges, this has not cost me anything as my insurance or the NHS have footed the bill. However, there are things that are not covered by my private or NHS care. For example, appointments with certain specialists. Next month I am seeing the expert consultant on mast cell activation disorder. For the initial consultation and a follow up it will cost me £780. Why not see a different doctor? Well, doctors that specialize in rare illnesses are themselves as rare as the illness and there are only a handful of doctors who specialize in MCAD in across the world. You may think I am exaggerating, but in my appointment last Saturday with the consultant cardiologist POTS specialist we talked about the beneficial use of oxygen and he said, “I will speak to a colleague of mine in Calgary [Canada] because I know he has a patient that has also had some relief, so we can compare dosages and usage.” One reason why specialist doctors are so rare for these conditions is because they lack funding — the money goes behind illnesses that kill the most people – therefore if you happen to have a rare condition, prepare for there to be little access to specialists and little research done worldwide. Tests can be expensive too and not all of these are covered by NHS or private healthcare. Any tests next months at the MCAD appointment will be coming straight out of my rapidly depleting savings account. The genetic test I had to confirm the Ehlers-Danlos syndrome diagnosis was £1300, and that was just a simple blood test. At that point in time I had run out of savings, so a very good friend of mine offered to pay for the test for me. The wheelchair I use is very specialized because it has to be lightweight and I have to be able to use it and sit in it without stressing or dislocating joints. The NHS covered the first £150 of a specialist wheelchair – only if I am a permanent wheelchair user. My chair costs were just over £3000 and if I were to add the proper electric wheels to it, it would be a further £4000. Last year I opted for a cheaper electric wheel solution which was just shy of £1000. All other mobility aids are not covered — specialist crutches, walking sticks, braces for joints, all of these can run into £100s each. Then of course there are other machines and equipment, like a portable oxygen concentrator. Thankfully I managed to find a local secondhand one which was only £400, but new they are thousands. We had to change our bed so I can try and get comfortable and prevent dislocations during the night. We now have a profiling bed. This is similar to a hospital bed, meaning I can control the head and feet and move it around to try and get comfortable. As a young(ish) married couple we didn’t want twin beds, so we needed to find a double that was individually adjustable; after all, my husband doesn’t want to wake up being flung across the room because I am raising my head because my shoulder has gone out again. So, that set us back another £2500. Yes, I probably could have gotten that cheaper, but I didn’t want a bed that looked like it belonged in a nursing home or a hospital – I spend enough time in hospitals,I don’t think it is unreasonable that I don’t want my home to look like one. Soactually, for what we required there were only two options that were affordableto us. Of course, if we had tens of thousands to spend then there are moreoptions. Do not get me wrong, I am not moaning, it is what it is and I know that I am incredibly lucky to live in the UK where we have a phenomenal healthcare infrastructure and support system. I also am lucky enough to have the amazing and continued support of my family and friends. There is something else though – I have always been fastidious about having income protection insurance (critical illness insurance). I am still employed and I still receive a percentage of my salary and I still pay tax and national insurance just like everyone else. Without that protection in place we would have been in a very dire situation indeed. As I mentioned it is not just rare illnesses that cost the person — all illnesses have a monetary value associated with them. Not even all forms of cancer treatment are available without costs. So next time you see someone crowdfunding for the cost of treatments or cost of new specialist equipment, please bear in mind how expensive it really is to be ill. My parting note and the best advice I can give you is – if you cannot afford to live without your salary (which let’s face it, unless you are very wealthy most of us rely on our salaries) please, please invest in an income protection/critical illness insurance policy; you never know what is going to happen in the future. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by mpalis

Lizo Wilkinson

How Fibromyalgia Taught Me Life With Imperfect Health Is Good

I can’t remember the last time I wished for something other than “my health.” You see, I’ve had health issues and the last thing I wanted was to have them again. But this year, I didn’t wish for my health. This is the year I developed a chronic health condition. One minute I was fine, the next minute, I felt intense neck pain. Over the next few weeks, it spread to my whole body. My doctor had no idea what was happening. None of the doctors at the practice did. After much persistence, I got a National Health Service (NHS) appointment with the spinal unit. Their verdict? Everything’s fine. Which was good, in some ways. In other ways, it was a bit of an “Oh. Well, what do I do now?” moment. It had been going on for three months now, so it could definitely be classified as chronic pain. It was only when I was researching someone else’s condition that I suddenly had an idea what it was. One of my Twitter followers has fibromyalgia, and when I looked to see what this was, I suddenly had a revelation. These were my symptoms. I have not yet received a diagnosis, as NHS waiting lists are normally eight months long. So I went on the Internet. I’m grateful to a blogger named Sam Cleasby who has posted information on living with invisible disability. I also found a lot of fibromyalgia-specific information on Julie Ryan’s website Counting My Spoons. I read so many accounts of people’s fibromyalgia experiences, such as it takes forever to diagnose and older doctors may not have heard of it. I also read many articles on disability on this website and found these accounts to be extremely useful. The more I read, the more information I gathered about how to live with a chronic health condition. I happen to follow spoonies on Twitter anyway, so I reached out to them for advice and help. This, too, has been invaluable. As I read during one of my many chronic condition/disability research sessions, the only people who can truly understand chronic health are people who are chronically ill and disabled. It has taken me a full year to come to terms with my situation. There have been many dark moments, and there will be many more, but like every “fibromyalgia warrior,” I’ve learned I am a strong person who is more than capable of coping with my new situation, or with any situation. I’ve learned not to feel bad if I have to spend the day just watching TV. There are some days I can do things almost like I used to, and some days I can’t. Most importantly of all, I’ve learned that perfect health isn’t the be-all, end-all. You can live a good life with mediocre or even poor health. And that is the reason I didn’t wish for my health. I’ve learned to cope with my varied health. I would tell others in my situation to stay strong. Doctor’s appointments are not easy to get in the U.K., so my primary support, advice and information came almost entirely from the Internet. If you have no local support, the Internet has a whole world of information. Remember to be very careful using it, though, because it’s a world of information and also a world of misinformation, too. As us “Supernatural” fans say to each other, always keep fighting — for medical professionals to listen to you, for people to understand and to find answers or a diagnosis. Lisa. The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.