When my daughter's were born in 1981 and 1987 I didn't expect either of them to be affected by the amount of health problems they have now at the ages of 36 and 30. Both of them began in childhood and neither of them seemed to be taken seriously; it was either growing pains or stress or some other problem, mainly the family spinal problem. It seemd that our doctors didn't want to know.
Both girls were referred to specialists, who shrugged off their knee and leg problems; with my eldest because she was a 'big' girl (she was overweight for her age) and my youngest because she 'doesn't click when the joint is manipulated' we were frustrated and upset, mainly because they were both in pain and missing a lot of school. In fact I was prosecuted for my youngest' non-attendance when she was 13... I took her out of mainstream school for the final three years and home educated her.
LISA' STORY
At the age of 11, Lisa started with knee pain, it had her awake at night and unable to move. Behind her knees was burning hot and yet because they weren't swollen or red, she was sent for physio and given painkillers. Slowly, as she grew older, it was all of her joints affected, she struggled daily with dislocating kneecaps and ankles, even visits to A&E only brought a shaking head and shrugs of shoulders; even a full length plaster cast at one point, yet no-one seemed to want to name what was wrong. By the age of 16 she was registered as disabled, but it didn't stop her looking for work and started in retail at 17 with plenty of support.
Jumping forward, by the time Lisa was 23, she had enough and decided to follow one of her dreams, that was to go to college and study art. She received lots of support there, far more than school ever did and she passed everything with flying colours, eventually going to Bolton University at 26. On a break from Uni and home for the summer, she met her now husband Andrew, within nine moths she was inevitably pregnant!
It was then that she was referred to a rheumatologist, a professor no less, who took one look at her, listened to all the problems she had throughout her childhood, did a few tests of her joints and said 'You have hypermobility...I'm referring you for further investigation' I could have kissed him! So, she was finally diagnosed with a form of Lupus and Ehlers Danloss...Yay! She also has Hughes Syndrome which has led her to miscarry nine babies since having my Grandson Joseph, it's heartbreaking.
LAURA' STORY
Similarly to Lisa, Laura began having problems young, but, her problems began when, at the age of 4, I went to get her from nursery one day and her teacher told me that she was limping badly. Taking her straight to the doctor, I was shocked when he pulled her sock off and her ankle was badly swollen. No explanations, no fever or twisting it, no infection or bite, just very sore and swollen. It carried on from there when, age 7, she began to have pain behind her knees, for which the doctor gave her Diflam rub. By 11 she had problems with her back and hips, similar to Lisa, we were never away from the doctor and when she was finally referred, he took one look at her, wiggled her hips and knees about and told her " Growing pains and shortened hamstring", that was it, dismissed with physio!
As she aged, the pain in her body got worse, she started with horrendous migraines and was tired all the time. Trips to the doctor resulted in a vitamin D deficiency and low iron diagnosis, no mention a referral for specialist diagnoses given the family history and no follow up at all with treatments. One doctor said it was all in her mind, stress, that she should have Cognitive Behavioural Therapy, so she became very wary of officialdom. That was until we moved house and thus doctor surgery; a doctor asked to see her because of the cocktail of drugs she was on and he was so shocked that there had been no help. (I should also say that she is allergic to a lot of things as well as having eczema and asthma) So, a referral was ordered for a rheumatologist... You think it ends there with a diagnosis don't you? Oh no!
The letter arrived and it was a referral to good old Musculoskeletal Triage! Laura, after her experience of doctors was adamant that she wouldn't go, but after much persuasion, we went August 8th and the doctor couldn't have been nicer. She asked and listened, examined her and agreed that she really did need to see a rheumatologist...Eureka! But, that still isn't the end... a letter arrived a week later from St Lukes in Bradford confirming her referral and a doctor would decide if she needed to be referred to them within 12 weeks. That takes us up to October 31st.
SO...
What the heck has our NHS come to eh? People in genuine pain, being made to wait for urgent appointments because of others wasting doctors time by saying things are worse than they are or there is nothing wrong with them at all. We all know someone like that don't we? The person who has everything a human being can possibly have wrong, yet they live normally and get every bit of help available just when they need it. Why can't the powers that be see through them?
Watch this space...
Tuesday, 22 August 2017
Monday, 14 August 2017
Oh the Joys Part Two: OUR WONDERFUL NHS…NOT! WHAT A FARCE.
Oh the Joys Part Two: OUR WONDERFUL NHS…NOT! WHAT A FARCE.: So, it's been a while, but after the last few months I felt that I needed to get everything out into the ether for posterity… Friday 2...
OUR WONDERFUL NHS…NOT! WHAT A FARCE.
So, it's been a while, but after the last few months I felt that I needed to get everything out into the ether for posterity…
Friday 28th April
I set off for a meeting in Wetherby, which is around 90 minutes away from home. It was a lovely, sunny morning, the roads were relatively quiet and it felt good to be driving further than the 5 miles to Asda and back!
Almost all the journey I had a man in a white Suzuki driving erratically behind me, hitting his steering wheel, shouting things and gesticulating for me to move faster or allow him to pass as we got through Otley and the roads opened up, but they were busy, with plenty of Bank Holiday traffic heading towards the east coast. I kept glancing in my rear view mirror at his attempts to overtake me and shaking my head, nervous at his impatience and thinking how stupid he was.
As I stopped at a major, and very busy, split junction, I glanced in my mirror again and sure enough, there he was gesticulating to me and saying 'Come on, come on…' I went back to concentrating on finding a safe exit into the busy road and shook my head when all of a sudden I was rocked violently forwards and then back… he had hit me with force! Not quite believing it, as we had both been stationary, I sat for a second or two, shaking like a leaf and feeling quite sick with shock as I tried to remember what to do in the event of an accident.
When I finally managed to put my hazard lights on, find my insurance details and get out to go see him, he was already out of his car and inspecting the damage. I have to admit to swearing at him and shouting, what did he think he was doing. His answer… it's a corker…
'I thought you had gone…!'
I hadn't even taken my foot off the brake, so he must have really put his foot down to hit me with the force he did. We swapped details and after he apologised, set off for our mutual destinations. By the time I got to my meeting the shaking had subsided, but my neck was beginning to ache.
I should explain at this stage that I have severe degenerative disc disease causing me extreme pain most of the time. In 1998 I was diagnosed with them out in my neck and had been having nerve block injections for the past five years to combat the awful pain down my left arm; I'd had my latest ones just two days before the accident.
Saturday and Sunday 29th/30th April
Well, I was in agony when I awoke on Saturday after a terrible nights sleep, which I knew that I would be, but it was a weekend and I wasn't about to go to A&E, it would be heaving. So, I spent all day (In fact all weekend) dosing up on painkillers and resting as much as possible. My daughter Laura looked after me and good friends popped in to help. As the weekend wore on, it got worse and by the time Tuesday came (Bank Holiday Monday don't forget) I had to go to the doctors.
Tuesday 1st May
An emergency appointment saw me being prescribed antispasmodic drugs and they helped with the muscle spasm going the entire length of my spine and helped, but not with the intermittent numbness all down my left hand side. The doctor wasn't overly worried about it as it was probably from the shock to my spinal cord, he said, so I put up with it.
**************
Over the next few weeks I had physiotherapy with helped the muscle spasm and when it came to an end (through my insurance company) it was recommended that I had a further eight weeks treatment. The spasms were still occurring and numbness was there continuously, having spread from my face, to my arm and shin, all down the front. Not completely numb, but feeling as if a local anaesthetic was wearing off.
Friday July 14th
I visited my GP again (another emergency appointment) and her concern was such that she ordered me an urgent MRI; I would hear within the week.
Two weeks later, (yes, you read that right) I received a letter asking me to ring to make a Musculoskeletal Triage appointment… I kid you not! Feeling a little perturbed (see angry) I rang the number and tried as hard as I could to get the woman at the other end to understand my frustration. All she could say was that all patients had to go through the MSK triage system to be referred (if necessary) for further consultations with whatever specialist it was deemed appropriate. What the…? So, after telling her that I didn't deem 59 days urgent, I rang the surgery and a doctor spoke to me. Wait until after the weekend, was the advice, then ring again, a doctor may not have looked at my notes and decided that MRI without triage was needed. Fair enough, thinks I, and does just that.
In the meantime, on Saturday morning, yet another letter came telling me that I hadn't made my appointment yet and it was imperative that I did so as soon as I possibly could; no shit Sherlock!
So, Monday morning (July 17th) I rang the number again and rather unwillingly, made a triage appointment for August 21st… yes, to our wonderful NHS that is urgent.
Two weeks later (July 31st) another letter arrived (great eh?) my appointment at triage had been cancelled, would I please use the online booking system to make an appointment at the Yorkshire Clinic Pain Clinic…again WTF?! So, rather than do that I rang my doctor and she was just as incredulous as me, how could referring me to a pain clinic that I was already a patient at, get me an urgent MRI for the lack of feeling in my left side? Anyway, she urged me to make the appointment because the clinic had MRI facilities and to let her know if the appointment wasn't in the following week. Going online I was given and appointment that Thursday (3rd August) and that was, it seemed, that. Later that afternoon I received a phone call from my pain specialist' secretary, could I go the following day, so agreeing that I could, finally, see someone I hung up with relief and awaited the following day.
Are you still with me? 𝩀:)
Tuesday August 1st
Finally I was in the office of my pain specialist Dr Khanna and the Yorkshire Clinic and he was looking at my notes.
'So, you've had your MRI through MSK and you're here for…?' he looked at me expecting an affirmative answer.
I began the whole saga as he began to look more and more incredulous by the second. Why had I been referred to him when it wasn't pain I was in and I hadn't had the MRI? His guess was as good as mine! Anyway, after a quick examination of the feeling, or lack of therein, of my left side, testing my reflexes and looking perplexed, he said that he didn't think that the lack of feeling was from the discs but from spinal cord bruising with it being early days after the accident. But, he would order one anyway along with nerve conduction tests, oh joy of joys!
I left his office feeling a little underwhelmed to say the least, having expected the "urgent MRI" to have been carried out that afternoon. Anyway, taking the slip with an order of scanning the brain and neck at C3-C6 to the X-Ray department I handed it over to the receptionist and waited for her to tell me to take a seat. Oh no, she didn't do that…Nooooo!
'Are you private or NHS?' she asked.
I told her NHS, she put the slip down and said 'Oh…we will write to you with your appointment'
Yep the good old NHS strikes again, my "urgent" MRI scan to see if discs were causing the numbness and possible life changing effects on my limbs, was going to take weeks!
A week later, August 8th, I received said appointment… 11th September!!!
So, the point of this blog, apart from boring anyone to death who actually reads it, is to point out the ridiculous state our NHS is in. How an appointment marked as urgent by a GP, takes weeks and months to get the right outcome and in the meantime patients are gradually worsening. It isn't on is it? Yet it happens to even heart transplant patients, more and more, people are having operations postponed or cancelled, appointments to see specialists take months and sometimes years, so much for the 16 week maximum wait!
Friday 28th April
I set off for a meeting in Wetherby, which is around 90 minutes away from home. It was a lovely, sunny morning, the roads were relatively quiet and it felt good to be driving further than the 5 miles to Asda and back!
Almost all the journey I had a man in a white Suzuki driving erratically behind me, hitting his steering wheel, shouting things and gesticulating for me to move faster or allow him to pass as we got through Otley and the roads opened up, but they were busy, with plenty of Bank Holiday traffic heading towards the east coast. I kept glancing in my rear view mirror at his attempts to overtake me and shaking my head, nervous at his impatience and thinking how stupid he was.
As I stopped at a major, and very busy, split junction, I glanced in my mirror again and sure enough, there he was gesticulating to me and saying 'Come on, come on…' I went back to concentrating on finding a safe exit into the busy road and shook my head when all of a sudden I was rocked violently forwards and then back… he had hit me with force! Not quite believing it, as we had both been stationary, I sat for a second or two, shaking like a leaf and feeling quite sick with shock as I tried to remember what to do in the event of an accident.
When I finally managed to put my hazard lights on, find my insurance details and get out to go see him, he was already out of his car and inspecting the damage. I have to admit to swearing at him and shouting, what did he think he was doing. His answer… it's a corker…
'I thought you had gone…!'
I hadn't even taken my foot off the brake, so he must have really put his foot down to hit me with the force he did. We swapped details and after he apologised, set off for our mutual destinations. By the time I got to my meeting the shaking had subsided, but my neck was beginning to ache.
I should explain at this stage that I have severe degenerative disc disease causing me extreme pain most of the time. In 1998 I was diagnosed with them out in my neck and had been having nerve block injections for the past five years to combat the awful pain down my left arm; I'd had my latest ones just two days before the accident.
Saturday and Sunday 29th/30th April
Well, I was in agony when I awoke on Saturday after a terrible nights sleep, which I knew that I would be, but it was a weekend and I wasn't about to go to A&E, it would be heaving. So, I spent all day (In fact all weekend) dosing up on painkillers and resting as much as possible. My daughter Laura looked after me and good friends popped in to help. As the weekend wore on, it got worse and by the time Tuesday came (Bank Holiday Monday don't forget) I had to go to the doctors.
Tuesday 1st May
An emergency appointment saw me being prescribed antispasmodic drugs and they helped with the muscle spasm going the entire length of my spine and helped, but not with the intermittent numbness all down my left hand side. The doctor wasn't overly worried about it as it was probably from the shock to my spinal cord, he said, so I put up with it.
**************
Over the next few weeks I had physiotherapy with helped the muscle spasm and when it came to an end (through my insurance company) it was recommended that I had a further eight weeks treatment. The spasms were still occurring and numbness was there continuously, having spread from my face, to my arm and shin, all down the front. Not completely numb, but feeling as if a local anaesthetic was wearing off.
Friday July 14th
I visited my GP again (another emergency appointment) and her concern was such that she ordered me an urgent MRI; I would hear within the week.
Two weeks later, (yes, you read that right) I received a letter asking me to ring to make a Musculoskeletal Triage appointment… I kid you not! Feeling a little perturbed (see angry) I rang the number and tried as hard as I could to get the woman at the other end to understand my frustration. All she could say was that all patients had to go through the MSK triage system to be referred (if necessary) for further consultations with whatever specialist it was deemed appropriate. What the…? So, after telling her that I didn't deem 59 days urgent, I rang the surgery and a doctor spoke to me. Wait until after the weekend, was the advice, then ring again, a doctor may not have looked at my notes and decided that MRI without triage was needed. Fair enough, thinks I, and does just that.
In the meantime, on Saturday morning, yet another letter came telling me that I hadn't made my appointment yet and it was imperative that I did so as soon as I possibly could; no shit Sherlock!
So, Monday morning (July 17th) I rang the number again and rather unwillingly, made a triage appointment for August 21st… yes, to our wonderful NHS that is urgent.
Two weeks later (July 31st) another letter arrived (great eh?) my appointment at triage had been cancelled, would I please use the online booking system to make an appointment at the Yorkshire Clinic Pain Clinic…again WTF?! So, rather than do that I rang my doctor and she was just as incredulous as me, how could referring me to a pain clinic that I was already a patient at, get me an urgent MRI for the lack of feeling in my left side? Anyway, she urged me to make the appointment because the clinic had MRI facilities and to let her know if the appointment wasn't in the following week. Going online I was given and appointment that Thursday (3rd August) and that was, it seemed, that. Later that afternoon I received a phone call from my pain specialist' secretary, could I go the following day, so agreeing that I could, finally, see someone I hung up with relief and awaited the following day.
Are you still with me? 𝩀:)
Tuesday August 1st
Finally I was in the office of my pain specialist Dr Khanna and the Yorkshire Clinic and he was looking at my notes.
'So, you've had your MRI through MSK and you're here for…?' he looked at me expecting an affirmative answer.
I began the whole saga as he began to look more and more incredulous by the second. Why had I been referred to him when it wasn't pain I was in and I hadn't had the MRI? His guess was as good as mine! Anyway, after a quick examination of the feeling, or lack of therein, of my left side, testing my reflexes and looking perplexed, he said that he didn't think that the lack of feeling was from the discs but from spinal cord bruising with it being early days after the accident. But, he would order one anyway along with nerve conduction tests, oh joy of joys!
I left his office feeling a little underwhelmed to say the least, having expected the "urgent MRI" to have been carried out that afternoon. Anyway, taking the slip with an order of scanning the brain and neck at C3-C6 to the X-Ray department I handed it over to the receptionist and waited for her to tell me to take a seat. Oh no, she didn't do that…Nooooo!
'Are you private or NHS?' she asked.
I told her NHS, she put the slip down and said 'Oh…we will write to you with your appointment'
Yep the good old NHS strikes again, my "urgent" MRI scan to see if discs were causing the numbness and possible life changing effects on my limbs, was going to take weeks!
A week later, August 8th, I received said appointment… 11th September!!!
So, the point of this blog, apart from boring anyone to death who actually reads it, is to point out the ridiculous state our NHS is in. How an appointment marked as urgent by a GP, takes weeks and months to get the right outcome and in the meantime patients are gradually worsening. It isn't on is it? Yet it happens to even heart transplant patients, more and more, people are having operations postponed or cancelled, appointments to see specialists take months and sometimes years, so much for the 16 week maximum wait!
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