Hello, I'm Adie.

I'm a 38 year old Mam of 2, step-mam of 3 living in Wales, 4 miles from the English border. (This is an important detail, remember it, I'll come back to it later on ;) )

I was born with hip dysplasia (where your hip sockets are shallower than normal) which was monitored until I was a year old, standard practice in the 1980s, and then left as it didn't appear to cause me any issues.

My right hip started causing me issues as i hit my teenage years, i saw a chiropractor regularly who diagnosed me with impingement and physios who diagnosed me with hypermobility and everyone, everyone blamed the pain on my being overweight.

In 2011, after the birth of my daughter i was hitting the scales at over 18 stone. I decided to do something about my weight once and for all and lost 7.5 stone over the next 15 months, discovering in the process that when you aren't carrying around the equivalent of another person in fat, exercise is really quite enjoyable. I did zumba, body combat, netball, Couch to 5K, aqua fit and hill climbing. I absolutely loved it all. I even became a football coach, setting up a new girls under 8's football team which i was immensely proud of.

Then in 2017 I injured my hip, suddenly every movement was painful. I spent the next 2 years going back and fro to my GP begging for them to investigate further than just telling me to rest it and i would be ok. In June 2019 I was finally referred to physio who sent me for an urgent MRI and in July 2019, two years after the injury, I finally got a diagnosis of a torn labrum and was referred to an orthopedic hospital over the border in England.

I saw a consultant at the orthopaedic who informed me due to my dysplasia just repairing the labrum wouldn't be enough, i would need a hip replacement. The waiting list was a year and as i had agreed to be a surrogate for my friends it was agreed i would work my way up the list whilst pregnant and be reassessed at the other side.

Then the covid pandemic hit. Elected surgeries stopped. Waiting lists grew. I had a healthy baby boy in May 2020 and waited eagerly for my appointment in July to discuss my surgery. Which was cancelled. And cancelled again.

October 2020 I saw a registratar who believed I was still young enough for a PAO procedure rather than a Total Hip Replacement. I won't go into the gory details but this is a HUGE operation which involved cutting out the hip socket entirely and turning it so there is more socket at the bottom to support the hip joint. The recovery time is years, not weeks or months and it it usually done very early, to prevent injuries like labral tears and changes such as arthritis. He said he would ask his collegue about my case to assess my suitability.

Infact he transferred me from the top of one consultant's list to the bottom of anothers. Who sent me for a new MRI where it was discovered I didn't just have a labral tear anymore, I now had arthritis, cartilage wastage, a cyst and degenerative changes too. Four months later he held a Multi Disciplinaary Team meeting which decided my hip was too bad for a PAO but that there was "insufficiant evidence to justify a Total Hip Replacment". I was distraught. Their treatment plan was physio until my hip worsened to such a degree that i could no longer walk and then they would replace my hip, but this could be 5-10 years down the line. I had already lost the last 3 years of my children's childhood, had had to give up work due to the pain. He referred me for a diagnostic/theraputic injection which if it worked would numb the pain in my hip temporarily for anywhere between a few hours and a few months or anywhere in between.

I sought a second opinion.

In May I asked my GP to refer me for a private consultaton (which i paid for) with a top london hip surgeon. He examined my images from the orthopaedic hospital and talked me through his findings. He found in addition to the obvious labral tear that i had sustained nearly 4 years ago and the arthritis, cyst and cartilage wastage that I also had acetabular impingement (bony lumps on the ball of my hip which should be smooth) and a torn and weakened ligamentum teres.

He was so frustrated by my journey and lack of treatment over the last 4 years that rather than have me pay thousands of pounds for the treatment I need he requested to my GP that i be transferred to him as an NHS patient. He prepared a cleaar treatment plan and a timescale that would see my fixed by the end of the year. The operation would be done as keyhole surgery, repairing my labrum and ligamentum teres, shaving the bony spurs off my hip to cure the impingement and debride as much of the arthritis as possible and recovery would be only weeks long. It would preserve my natural hip for as long as possible.

I SOBBED MY HEART OUT WITH RELIEF!!!

I was going to be fixed!! I wasn't going to be the grumpy, hobbling, in pain shell of a person that I was now, I was going to be fixed and be me again! Run with my children, play sports again, dance at my own wedding!

And this is the part where me living in Wales comes in.

In Wales, we do not have patient choice. We do not have Choose and Book healthcare. We cannot request a particular surgeon or a particular hospital. We have absolutely no say in our own healthcare. And my GP was unable to refer me to the London Surgeon even though she would have done so in a heartbeat.

I wrote to my MP. To my AM. To the Minister of Health for Wales. I asked how this could possibly be fair, how I could be offered life changing treatment in England and be unable to go because I live in Wales? Especially when the Orthopaedic hospital they had sent me to was also in England!

All down to contractual agreements and money they said. They already pay the Othopaedic hospital to see and treat Welsh patients. They don't have a contractual agreement with any others. I would have to apply for the funding to my local health board.

So the London surgeon actually did that for me in July this year, so disgusted was he by the unfairness of the Welsh system. The amount of funding requested was £1223 for my hip arthroscopy. The price for me to pay to have that same surgery done privately, at the same hospital, with the same surgeon, with the same anaethetist and the same after care is £9903.

It was declined on the grounds that same procedure could be performed at the Orthopaedic hospital who's care I was already under.

Fair enough. September 2021 I went to my next appointment with my consultant, the one who I hadn't actually seen since October 2019 and asked them as i wasn't suitable for a PAO or bad enough yet for a total hip replacement if they would do the same procedue as the London surgeon had suggested. The answer was NO. I could have steriod injections twice a year and physio for pain relief until my hip had worsened enough to warrent replacement. On what clinical grounds? A difference of clinical opinion. I explained I would like to know the medical and scientific reasoning behind their refusal to fix me, and what their treatment plan was for me. I had walked in to their care with nothing more than a torn labrum in 2019 and no due to their delay I had arthritis, cartilage wastage, a cyst and weakened and damaged ligaments but all are fixable. Why won't you fix me?? There was no scientific reasoning, just that that particular consultant only performs Total Hip Replacements. And as I wasn't in need of one of those yet, they decided to discharge me. No pain management. No physiotherapy. No steroid injections. Just a letter full of errors discharging me from their care and wishing me well with my appeal.

This letter, stating that the Orthopaedic hospital have refused to perform the surgery is going to my appeal as evidence that all local options have been exhausted but I have been advised not to get my hopes up because I live in Wales I am not entitled to the same level of care as someone who lives just 4 miles away in England.

I have put in a letter of complaint with the help of the local Community Health Council on the treatment or lack thereof I have received there. But I can't change the past now, what has happened has happened, I need to look to the future.

So here I am, September 2021. 4 and a bit years after sustaining the first injury, surviving on £100 worth of painkillers a month (that get less and less effective as time goes on, cause damage to my liver and kidneys and make my hair fall out), no physiotherapy, no steroid injections, no treatment plan, no timeline and no end to this nightmare.

I know it's been a really tough 18 months for everyone. But if you can spare anything, even just a share on your social media I would be hugely grateful, as will my family, who will get me back, the real me, the happy, energetic, physically able me. The me who wants to complete her degree in Health and Social Care and work with Care Leavers. The me who will go on fighting against social injustices just like this one.

Thank you,

Adie