Vicki’s Open Letter

 

This is Vicki Dennis.

I came across her story on a community facebook page, and was so moved that I offered to share her letter on my blog. I asked Vicki to send me a photograph to make her letter more personal. What a pretty girl she is! And how tragic that she spends every day in pain like this, when it could possibly be avoided with a little more help from ‘our’ Health Services in the UK.

Please share, especially if you are in countries outside the UK. I am hoping that there is a doctor out there who can help or advise this brave young lady in her time of need.

With lots of love to you, Vicki,

The Hedgehog xxx

 

MY OPEN LETTER

by Vicki Dennis

To whom will listen,

I am writing to you as my last resort, to plea for some interaction from Senior Officials to try and save my life. In summary: My name is Vicki Dennis. I am thirty-three years old & I live in Bracknell, Berkshire. I have a rare genetic disorder called Congenital Muscular Dystrophy and Scoliosis, which are both degenerative illnesses. As a minor, I received excellent care from the NHS and social services. This care has significantly reduced overtime and I’m at a stage in my life where I need help the most and I am not getting it.

I experience extreme pain constantly, driven by the metal rods in my back that are fused to my spine, no longer serving their purpose, for which doctors have incorrectly administered a medium-solution, resulting in me being back on a waiting list for the treatment.

I am deteriorating fast, which can be slowed/prevented with on-going physio and hydrotherapy, something my GP is denying me.

I do not have an ‘owner’ for my medical care, resulting in endless lists of different doctors, who all start from scratch and are too nervous to make any decisions on what to do for me.

I feel like I’m stuck in a black hole and facing a slow and painful death, whilst I know that with some focus, the NHS will be able to help me.

If you are in any position where you feel you could make some form of difference to my life, please please help me.

Here’s a detailed view of my journey so far. I was born with a muscle wasting condition called Congenital Muscular Dystrophy, this condition has caused me to have weak arms, which are contracted, this means they do not straighten. I have limited strength in my legs and I waddle when I walk due to weakness.

I also have Scoliosis, which is curvature of the spine. My spine was in a ‘S’ shape and at the age of fourteen I had a spinal fusion to help correct the curve by using metal rods to hold my spine in a straighter position.

I was born at Heatherwood Hospital in Ascot, Berkshire. I was born by C-section, I was completely floppy, like a rag doll. Although I was only 5lbs the doctors delivering me managed to break one of my arms and legs! I was taken to Hammersmith Hospital Straight after I was born.

I continued to attend Hammersmith Hospital, where I was under an amazing man called Professor Dubowitz. He monitored my condition. My parents were told I would never walk or have much of a quality of life. Little did they know they had a determined little girl on their hands. I used to have to wear a neck brace to hold me neck up because I was floppy, I had a back brace to hold my spine in position and callipers to help me walk.

I used to have very intense physiotherapy at Hammersmith, and it continued until I was sixteen. I also used to have it roughly three times a week at School, along with being taken Swimming, and I went horse riding, which I loved very much.  

It was key that I was given all the physiotherapy and hydrotherapy to keep my muscles moving and for me to get stronger, without it, I would just get very weak at a young age.   

Growing up, I lived with my mum, dad and sister. Although I suffer with all of the conditions, I had a very happy childhood. I enjoyed school and interacted well and had lots of friends. I completed my GCSE’s and I went on to do A Level Business studies. I was very ambitious and couldn’t wait to start working. I completed my A Level Business studies and passed with a Distinction.

I never really saw myself as being disabled, I felt what I call ‘normal’. I passed my driving test at the age of 17 and got my first Motability car. A Black Toyota Yaris. I felt so independent. I used to get help into the car, and off I went. I felt so amazing.

Work life was amazing, I was progressing well with a blue chip company, and I had made some amazing friends.

I was always going out at weekends, enjoying myself. I was so happy, despite my obvious condition and special needs, I wouldn’t let anything stop me.  

In 2002 I was offered a flat by my local council, which had been decorated by my dad and my mum and sister had been organising lots of bits as I was putting my own kitchen in.  As the local council weren’t going to change the bathroom to suit my needs, which were that I needed a bath instead of a shower as I was getting weaker and a bath was a lot easier and safer as I had a bath aid. Unfortunately, the kitchen only had lower counters for a wheelchair user in there, which wasn’t practical for myself and my live in carers. So I had to compromise and pay for the kitchen myself.

I moved in October 2002, I had live in carers living with me for six months at a time. It was a bit of a nightmare to get used to, but I got there in the end.

I was starting to get a lot of pain in my back, my attendance at work was slipping because of me not being able to get cope with the pain, and sitting on an office chair for practically seven hours was not doing me any favours. But I continued going to work, but fortunately I was made redundant and was given a very good pay out. So I knew I could afford to take some time off working before looking again for a new job.  Without sounding weird, I was beginning to feel disabled for the first time in my life really.

In 2005 I went on to Friends reunited dating to have browse, after what had happened to me, I hadn’t dated at all. But I felt maybe I could have a look, I felt safe just looking on the internet. Knowing no, one could get near me.  This guy’s profile really stood out to me. He was funny, going on about free sandwiches at functions. I dropped him a message and said hi. A few days later I received a message back. Little did I know, I would fall in love. I have been with Keegan was twelve years now.

After I was made redundant, it was really hard to get another job. I required more help, and companies weren’t really cool with it. They didn’t want me to walk around the office in case I fell, but I had to move, and I could move. So I felt like I couldn’t do my job.

My back started getting a lot worse, and my neck started really hurting, but my GP didn’t really know what to do. I started taking quite a lot of medication. I could feel my condition was deteriorating. I was offered 6 sessions of hydrotherapy back in 2007 which I loved. I have asked the GP every time since and I have been told that they are no longer able to refer me and the same applies with physiotherapy.

My boyfriend Keegan, gave up his job to become my full time carer, as I need so much care that the live in carers weren’t able to offer it. I made sure that the local council were okay with him being my paid carer and they said YES. So he resigned from his well-paid job in London and became my full time carer.  The money he got paid helped us to live and pay all the bills. Within six months they decided he wasn’t able to continue doing this, saying I could have carers coming in three times a day. If you can imagine, I am unable to lift a cup/bottle or anything, because of the lack of strength in my arms. I am unable to stand up from sitting to get up to use the toilet. I cannot use the toilet. I cannot remove my clothing, or wipe myself. I was asked by the head of adult social services in Bracknell Forest Council, how many times I went to the toilet a day? I couldn’t believe it. I felt so upset and belittled. This woman should know my boundaries from working in a department that organising care for vulnerable adults.  I had to battle with the council for months and months, and in the end they said my boyfriend could look after me but be paid through an agency.  How stupid is that.

It’s now 2016, I am thirty-four this year. I suffer from the worst pain I have ever experienced in my life. I barely get any sleep because I am unable to get comfortable because my whole body is in agony.

I have problems swallowing food because of the muscles in my throat are giving up on me.

I have to use a straw to drink as my arms aren’t strong enough to pick up a mug or glass. 

I have severe pain in my neck, where the bones and muscles have fused together, meaning I cannot move it, this is causing absolute agony in my shoulders, back and hips.

My heart keeps racing and causing me worry.

For 98% of my days are spent sat on a sofa in my living room because I am in so much pain, extremely tired and so medicated I feel poorly. 

 I am under a surgeon at John Radcliffe hospital and I see a specialist at a London in hospital who see me about my muscular dystrophy. I cannot fault them for actually seeing me at their clinic, but unfortunately I haven’t had any treatment from them except some injections in my neck last year… they put them in the wrong place, so I am on a list to have them done again.

I go to see my GP when I am poorly, which recently is quite often. I have a five-minute slot when a locum doctor which I have never seen before, who doesn’t know me. I ask them for physiotherapy and hydrotherapy every time I visit. The answer is a big fat no.

I take this amount of medication:

• 3 x 300mg Gabapentin (every 4 hours)
• 2 x 500mg Solpadol (every 4 hours)
• 2 x 10mg Oxycodone Hydrochloride (Morphine)
• 20mg Citalopram (Antidepressants)
• Cerelle (Contraception pill)
• 5mg OxyNorm if and when I need it. (Morphine)

When they say no, my tummy sinks a little bit lower, as I feel like I am being let down by the NHS so much.

I don’t know how long I can continue to live in this pain. My family must hate seeing me so upset and down. I want to be able to have fun with my friends, but most of all my boyfriend.

For anyone reading this, please can you send it to everyone you know, I am really hoping there is a doctor or physiotherapist that might be able to help me.

I want my life back, I want to be able to go on holiday and there not being problems with disabled rooms, and not being able to relax because I can’t shower for the whole week because the holiday company messed up.

I want to be able to go swimming to I can get stronger; I am so scared about my future.

Thank you for reading this.

Vicki x

Vicki’s website: http://www.vickiydennis.co.uk/#!about-me/c1gbq