Why I Wrote a Complaint to the NHS

Trigger Warning - mention of suicide attempt

After I moved to live with my partner in another county, I ended up launching a lengthy complaint against the NHS. Before this point in my life I had never complained about anything. I felt that I should be grateful for the care I was receiving. After all there are other countries where I’d have to pay hundreds of thousands for what I needed. I had only moved about 2 hours away by car, but the two NHS trusts handling my care seemed completely unable to communicate this with each other. I went from having a care coordinator and being under a community mental health team, to having no care available to me.

For months after, I spent countless hours on the phone to both trusts, attempting to find out where all my data had been sent. The old trust were completely clueless and the new trust refused to treat me until they had received my information. As you can imagine this went on for months, as I gradually got more and more unwell. To cut a long story short, I ended up making some attempts on my own life and being admitted to psychiatric ward for a few days. Even after all of that, the local team simply shrugged their shoulders and said there was nothing they could do.

So, with the support of my family, I decided to write a complaint. I’ve always been a very passive person who tends to avoid conflict, even if that means I miss out or suffer. For me it wasn’t easy deciding what I wanted to do.  It was however, the first time I understood that if I wanted to get the help I needed, I would have to fight for it. Using my knowledge of previous services in the place I grew up and also my experience training as a mental health nurse, I tried to work out what sort of basic care I was entitled to. I knew that my care should have been easily transferred to another community team within a few weeks. I knew that I should have been assessed by a psychiatrist, who would look at whether or not my medication needed to change. I researched the teams and their referral processes. By finding out what they should have done, but hadn’t, I was able to formulate my complaint.

The aim of the complaint was not just to have a moan at the NHS. I wanted them to realise that I had slipped through the net and for them take action to rectify the situation. Making a complaint wasn’t just to help my individual case. I hoped that it would help others in my situation in the future. If the NHS know what they are doing wrong, in some cases they can make sure it doesn’t happen again. Of course many issues may actually be due to funding these days, but there are other ways for you to take action. Get involved with your local mind charity. They run all sorts of campaigns and events aimed at making the government take notice of mental health.

So what came of the complaint in the end? Well actually way more than I could have imagined. My current trust acknowledged the hardship I had been put through and arranged for me to be assessed by one of their community teams. They sent me a full apology signed by the director of services. As a result of actually being listened to, I was referred to the complex needs and personality disorder service. In the end I was under that team for 3 years. They put me through some pretty intensive therapy and honestly it did me so much good. Back then I couldn’t have imagined how far I would come. I certainly never thought I would be working a full time job, enjoy my relationships and take part in blogging and other forms of activism. In a way you could say that making that complaint changed my life.

Self-care checklist with hints and tips

Note: This plan is specifically tailored to my needs. You’ll need to adjust it.

Everyday Essentials - (Activities you MUST do every day to stay well)

Shower/wash/other basic hygiene

Put on clean clothes

Take your medication as prescribed

Eat 3 meals a day

Get between 7-9 hours sleep

Everyday Recommended  - (Extra daily tasks to boost wellbeing)

Talk to someone - make contact with a friend or family member even if it’s just a text.

Get time in the sunlight - Even if you can’t get outside, get those curtains open, vitamin D does wonders.

In A Week - (Weekly activities to aid recovery and keep you well)

Plan your week - to do list/shopping list/meal plan

Creative time - Minimum 3 times a week.

Relaxation - Every other day, more if you can.

Socialize - Meeting up with people at least once a week.

Exercise - cardio 3 times a week, yoga at least once.

My Self-care Tips

1. Get organized! - Get yourself a diary or create a timetable. Being organized works wonders for me. If I don’t attempt to plan my time then I know I personally will end up sitting in bed playing games and watching netflix in my pajamas. I also keep a food and mood diary and take part in meal prepping, which means I still get to eat healthy food on the days I lack the motivation to make it.  

2. Start with the basics and build up - Often my downfall will be trying to take on too much at once. When my mood pops back up after a low, it can be easy to get fooled into doing too much to try to “make up” for lost time. This only results in your mood crashing back down from exhaustion. Take it slowly. If you only get 1 thing done a day then that’s still cause for celebration.

3. Set a daily goal - I try to spread out errands and tasks throughout the week, as opposed to getting it all done in a couple of days. Things like making appointments, doing housework and responding to emails, it’s much easier to set them as a daily goal. My diary is brilliant and even has a little box to enter your goal at the top of the timetable. You can add your own or even get a chalkboard or whiteboard to write it on.

4. Reflect on your week - Reflection is a huge part of recovery. Being able to look back and see your progress is a great motivator. It also helps me to see when I can add more activities or if I’m lacking in an area. Keeping a journal is a brilliant way to do this.

5. Learn to say no - Balancing your life is no easy task. Often friends, family and work will want things from you. Whether that’s offering support, attending social events or putting in a few extra hours. There are times when all these things are happening at once and you notice your mental health starting to deteriorate. This is the time to prioritise what’s important to you and this might mean saying no. It’s okay to say it. It seems scary, but the people who really care about you won’t be angry at you. More often than not they’ll understand you rearranging to protect your health.

Self-care for recovery

Back in December I posted about the importance of self-care. As I mentioned self-care is the act of looking after oneself, whether that’s physically, mentally or spiritually. For those of us with BPD, it’s vital in retaining the emotional resilience to cope with our day to day stressors. Even if you don’t live with any mental health problems self-care is still important. Stress affects us all in this busy, ruthless world where our worth is often based on how much we earn, or how useful we are to society. The day in day out struggle to keep a roof over our heads, feed ourselves and just stay afloat, makes us weary. Without self-care most people would be heading for some sort of crisis in their life. You just never realize until you get there.

Having been signed off work since the beginning of January, recovering from a breakdown, I had been allowing myself to stagnate. Most days I found myself simply laying in bed, staring at the ceiling. I felt unable to look after myself in any way; even small actions seemed like mountains. I had gotten trapped in a vicious cycle of feeling bad, so neglecting my needs and therefore feeling even worse. I found myself spiralling down. What I needed to do was to build up the courage to break that cycle. There had to be a self-care intervention.

One afternoon I worked up the energy to force myself to self-care. I started by cleaning the house; I find a messy house equals a messy mind. I put things away, dusted and hoovered. You know what? I hated every last second of it. I felt tired, my limbs were heavy, I wanted to give up. All the symptoms of a low episode were still there, but in that moment I was able to fight through it. After wards I took a shower. I hadn’t had one in over a week and now I wanted to feel clean to match the house. I often struggle with personal care, because sitting in my own filth gives me a reason to feel terrible; almost like the outside mirrors the inside. I know that I always feel better after a good shower, but my BPD tries to stop me, I don’t think she wants me to escape her claws. But, I did it. After every little thing I did I felt better and better. I planned my week, I started eating good food and even managed to do some yoga and meditation. Over the next few days my mood began lifting and stabilizing.

Over the last few weeks I have gotten myself into a place, where I am no longer spiralling. I won’t say that it’s been perfect, because I’ve been up and down. I had fallen back into old habits a few times, but each time I was able to dig myself back out. Recovery is complicated and it’s normal to be taking two steps forward and one step back. For example I just spent a couple of days in bed, using alcohol to numb the pain and hating myself. With support, I made it out.

I aim to go back to work at the end of the month and for this I need my recovery to continue. In order to do this I have to keep up the self-care. Neglecting it could cause a relapse and actually stopping could be a sign of things starting to breakdown again. My intention is to set some realistic goals. In December I had planned to do more self-care as part of my new years resolution. Now it makes even more sense to do this.

I will be starting this self-care challenge to see if I can keep it up and make slow changes to my life. I hope anyone who reads this might consider doing the same. I hope to be posting weekly updates of how it’s been going and how it’s been affecting my mood. I’m going to be starting small at just a few activities a week and slowly build up. I’m going to post a checklist of sorts for the self-care I should be doing everyday and some less frequent ones. With any luck this should help to keep my mind out of trouble.

As a further note: Self care is hard. A moment will come where you have just enough energy. You have to fight. You can gain back control. It might take some time, but eventually that day will come. It’s okay to ask for help too, that’s a sign of you acknowledging your own needs. We don’t have to do it alone. Set reasonable goals. Praise yourself and don’t get mad if you can’t manage it today. There are more days. Recovery is slow, but it is worth it. Getting out of the rut will be the best thing you ever did.