"Delays in progressing surgery"

Around May 2015 I started to feel very tired and was generally struggling to have any motivation for life. I had previously carried out a lot of voluntary work on top of bringing up my family and working full time in a pressured job. I was a very positive upbeat person with a general zest for life. My job was stressful and I initially put how I was feeling down to this, however without realising it I was clearly deteriorating and in late November 2015 I had some sort of breakdown, where I had suicidal thoughts and nearly took my own life. This was put down to menopause and I am sure this was a factor, however at the time my blood results showed a low vitamin D and high calcium. For the first time in my life I was struggling emotionally and sought support from a Counsellor through my workplace scheme. I was off work for 4 weeks and returned to work too early with the reluctant agreement of my Counsellor.

As the Vitamin D improved, so did my general wellbeing. I obtained a different role at work and was able to do a good job, however this was at the expense of any other aspect of my life. My family had to take over all household duties and out with work was generally sleeping or had no energy to do little else. I had pain in my legs and hands which was intense. I was seeing the GP regularly and was undergoing blood tests to check Vitamin D and the calcium. After around 6/7months on the Vitamin D tablets these were stopped by my GP.

In November 2016 a GP in the practice noticed the pattern in my blood results and asked to see me. When I spoke to her, I explained the symptoms I was having with the chronic pain, the exhaustion, the poor mental wellbeing, the lack of motivation for life and the impact this was having on me and my family. The GP immediately referred me for further blood results, which indicated to her I potentially had Hyperparathyroidism. Based on the severity of my symptoms and the impact this was having on my ability to work and my life in general, the GP sent my referral off as Urgent. At the time my GP advised I should be seen soon, however if I did not have an appointment within 3 weeks I should call the NHS to see where my referral is as the consultant may downgrade this. When I called the NHS, I was told it had been downgraded. This confuses me that a GP with years of experience, having seen me personally and considered the impact of the symptoms I was suffering severe enough to require urgent treatment has their opinion ignored.

At this time I was fortunate to have paid into a friendly society through my payroll and this provided me with funding to obtain a diagnosis privately. Due to the festive period it was early January 2017 when I saw a consultant endocrinologist privately. He immediately looked at my blood results with Vitamin D of around 20 and put me straight on to this. I received an ultrasound scan and Nuclear Medicine Scan both of which confirmed I had an adenoma on my lower left parathyroid. The consultant however was reluctant to move to operation at this time due to the levels of my Vitamin D and stated surgery should be completed around June when he would review my Vitmin D levels.

I eventually received an NHS appointment in May 2017(a full 6 months after my GP send an urgent referral) to see the NHS consultant - prior to my visit I phoned the secretary and explained everything and asked if I needed to take anything with me. I was advised no. I saw the consultant who took further blood results and sent me for a bone density scan. He also advised he could not access the copies of the letter the private consultant had submitted to my GP. This was a concern to me, as I thought that all my medical records were accessible electronically within Lanarkshire- If not – why not?

The NHS consultant at Wishaw General wrote to my private consultant, however when I contact him direct he never received any correspondence. After waiting to receive the correspondence and several emails from me he agreed to send all test results to Wishaw, which was completed around the end of May. My blood results confirmed Vitamin D of 50 and I expected at this point to be referred to the Surgeon to arrange an operation. I had pursued the option to have the operation funded privately but this was not an option. Since then I have called the consultant secretary almost weekly to try to progress this. Eventually, I was asked to go to the ward for further tests and was told this was to enable the blood results to come back quicker than through my GP. I went to the ward to following morning, I then received a letter from the NHS consultant around 3 weeks later, who stated my condition was secondary and not Primary and that he was seeking advice from the consultant I had seen privately despite the fact I had already made it clear I did not have funding to pursue matters privately. I found this very frustrating after having previously been advised my condition was primary. This also had an effect on my wellbeing as I was now concerned that I had a condition which could not be treated.

Due to my deteriorating health I reduced my hours effective from 26th April as a temporary agreement with my employer to enable me to remain at work, however this has had a large financial impact on me and my family. My employer has also moved me to a less intense job, to help me manage my condition better however this is also on a temporary basis. I am still currently working 4 days with a Wednesday off as this enable s me to work 2 days, rest on the Wednesday and then work 2 days before having the weekend off. The agreement should have ended in July as I had expected to have had the operation in this time but it has been extended due to the delay, however this agreement cannot continue longer term and it is crucial I receive the operation ASAP.

Having no access to further private funding and to expedite the second opinion I arranged to see the consultant privately by self-funding, which with reduced income, I struggled to afford. The consultant was surprised that I had not had the operation or been referred for surgery as in his opinion I was a clear case for surgery to have immediate health benefits. He also confirmed that the scan results were very conclusive in that both scans showed a 7 to 8 mm adenoma on the lower left parathyroid. He wrote to the NHS and confirmed this in early August. I received a letter dated 5 days later confirming I have now been referred to the surgeon.

On speaking to the surgeon secretary I have been told that the surgeon will make the decision on whether I will be operated on, not the consultant who has recommended this and that I will receive an appointment within 6 weeks to see her at her clinic. At that point if they agree to surgery then I will need to wait for an appointment for that. This is further news which is causing me a longer delay again and makes it difficult to stay as positive as I can.

Out with work my husband has become my carer, having to cook all meals, remind me of things in general and also support me daily through my lack of motivation to go on - something I never suffered from prior to this condition. I still have bone pain in my fingers and shins. It is now 9 months since my GP sent my first referral and I am still waiting and based on the information today it is looking like it will be a full year from referral to operation. How can this now be progressed faster? Do I need to speak to my MP?

Regards.