"My overall treatment by health professionals"

Hi I am a 49 year old female, I have been getting bothered with my mobility. Heavy legs arms, left hip, left leg, left foot back of my neck, left shoulder breast, suffer migraines have done all my life, have irritable bowel which I have suffered from since I was a little girl and severe exhaustion, hearing faint music especially my left ear, high pitched noises pain like my ear is going to burst open.

I got referred to Rheumatologist at Stonehouse hospital 2 years ago who was really rude had absolutely no time for me and diagnosed fibromyalgia. 

When I went to physio a few months after the rheumatologist appointment things were getting worse, the physiotherapist suggested that I phone rheumatology and ask for a second opinion, which I done.

I was told I couldn’t get it, and had to go thru my own GP which I did ask for, but it was at the start off the first lockdown and she assured me that she would see to it when restrictions where lifted. Obviously things had gotten worse again as time was going on, so I saw a locum doctor and had a neurological assessment done by the senior physio, who then referred me to neurologist last year in September. I have been waiting on this appointment for about over eight months.

Since September 2020, things have gradually gotten worse for me and my sixteen year old son is caring for me. I have asked several times for a doctors appointment always got a senior nurse and I was back recently at an appointment the nurse said it was an MRI I needed but they could not authorise it, could only refer me for X Ray. My sister attended this appointment with me as I am no longer able to walk by myself. 

I also put a complaint into my GP practice asking my GP to make my appointment to neurology an urgent appointment. I had put a complaint into patient services who e mailed me back to say it was a 62 weeks waiting time as my GP had only done a routine referral, and stated that I wouldn’t get my second opinion for Rheumatologist as it was over the six months. That response came in an Email from Hairmyres hospital East Kilbride.

OT have visited me in my home and have said they can’t help me till they know exactly what is wrong, but did give me certain aid so I can wash myself, Aqua joy for my bath and cutlery and another banister so I can pull myself up the stairs. The speech therapist has said the same as I have bother with choking on food and also getting my words out. Someone had came out to my house also from falls team and had phoned neurology to try and find out how far up the list I was - I still got ignored.

I have also told my doctor physio, MS, Lupus, Rheumatoid arthritis all run in my mums side of the family. Have also been waiting for an appointment for X ray on chest shoulder as that’s all My GP practice can refer me for since December 2020,and a referral for my breathing which I have been waiting since December 2020.

Since first writing this out, I did attend a Neurologist appointment at Hairmyres hospital, which lasted all of ten Minutes and was giving me a diagnosis of functional neurological disorder on the back of fibromyalgia diagnosis. The neurologist wouldn't listen to me, would not even look at the notes on my phone, told me to be quiet as they were writing when I tried to explain anything. After words with them, they agreed to brain MRI and spinal column and when I asked how long I would have to wait, I got the reply you will get it in the post - so no doubt wait months for that.

The neurologist did actually say that probably have these conditions because of trauma from I was young like being abused, I am even more astounded that that can be assumed about me, is it because of my post code or because I am a single mum that these assumptions are made. I have put a second complaint into patients affairs as that’s me left again.

I asked for an actual doctor appointment and have a full examination done, the GP said my joints and muscles were deteriorating especially the left side and examined my hands and did say to me I did not have fibromyalgia as it did not cause this type of damage. They said they would write a report to neurologist asking for the MRI to be made urgent, I explained to my GP I had an answer from patient’s affairs saying the information was not coming from my doctor to the relevant parties, don’t know if that’s a case of passing the buck. This was sent to me in a letter form not email.

I am under no specialist as I can’t get a second opinion from a rheumatologist which I find strange as well, the neurologist did offer to prescribe tablets that I had already tried but if they had read any notes about me they would have that and not offered me them.

Until somebody can actually take the time and find out what is wrong with me, I can not access any help and me and my sixteen year old son are just left, and I just keep getting ignored at every turn.

I am so fed up of being ignored by health professionals and being made to feel like I am not worth their time, I am a single mum and have stated on numerous occasions to my doctor I don’t drink Alcohol as my Vitamin B9 is constantly low. Instead of them trying to find out what’s causing it to be low, also suffer a lot of problems with my sinuses, I am sick of getting offered opioids for pain and have refused them, I want to know what is wrong with me.

You can understand my frustration and feel like I am totally being ignored. People that I know with less going on have had appointments with specialists before me, but because a rheumatologist that hardly examined me gave a fibromyalgia diagnosis I am left

I am left feeling useless, worthless, and like health professionals see the word single mum so do not take the time to investigate properly what is wrong. There is a lot more to my story that just what I put on your care opinion and I still think that word single mum comes up and the assumption is there. I am sure there will be others the same so please share your story,

Hopefully sharing my story will help people not give up when they know something is wrong because this has been a fight for me and it has made me understand how bad it must be for some people that are not strong enough mentally to get anyone to listen when deep inside they know something is definitely not right.