Saturday, 31 May 2014

Our London trip - May 27th to 31st 2014!

If you've read my post called London Bound you will know the background to mine and Martin's trip to London to see some West End shows.
This is a follow up post about our trip.....which was amazing! :-)

We stayed in three different Premier Inns! 
That was only because we wanted to split up the drive on the way up - I'm still not allowed to drive due to the Menieres  Disease :-( - and we stayed an extra day when we found another show we wanted to see!
We stopped on the first night, at Premier Inn Andover. There was no particular reason to stay here other than it being a couple of hours up the road and conveniently situated just by the A303!
We struck gold though!
When we stay at a Premier Inn or Travelodge we always try and remember to call them a few days before our stay to request a ground floor room or if they have a lift, a room right next to the lift! Most of the time this is fine and if I haven't booked a disabled room I'm normally asked if I'd like one. I was asked that when I called but was then asked if I needed a wet room! Normally the rooms just have a shower over a bath which is useless to me as I can't get into a bath! So being offered a wet room was fantastic!
Big tick for the Premier Inn Andover! :-)
We left there on Wednesday morning to travel on up to London. I was getting quite apprehensive because I was going to the theatre in my wheelchair which meant we were driving in to central London to find somewhere to park!
I will just mention a really handy book of maps that Martin found. It's called Blue Badge Guide to London and we got it from Amazon (but I expect there are other places you can buy it!) It's got very detailed maps which show you where there are parking spaces and car parks, how long you can stay there and how accessible they are. For anyone who is going to be going to London, who needs to park in the centre, I would say that this book is a great addition to have in your glove box!
Unfortunately we had booked to see a matinee on the Wednesday and finding a parking space in Central London on a work day was asking for trouble! Needless to say we didn't find a space but there was a car park just down from the theatre so we went in there. We needed four £5 an hour though so that was ouch! 
The show we went to see that afternoon more than made up for it though! It's called The Book of Mormon and is written by Robert Lopez, Trey Parker, and Matt Stone. It is not recommended if you are easily offended but if not it is absolutely hilarious! I was lucky enough to have been given the cd for my birthday a couple of weeks ago and I'm so glad because it's brilliant! It is really good to see something so new and fresh in the West End and to see it doing so is not easy to get a ticket for it! 

Talking of tickets, I made a point of phoning each theatre directly when I was booking my tickets because most of the theatres now have a dedicated special access phone line on a special phone number. It's not too hard to find the numbers, Martin just did a search and found them for each theatre. You will find that each different theatre will have their own policy when dealing with disabled. Most of the ones we booked gave us either a half price top tier ticket each or buy one full price and the Carer goes free, so not much difference really but it made a huge difference when it came to paying for them. 
We had fab seats for Book of Mormon, we were in the fourth row from the front, on the end. These tickets should have been around £150 each.......We paid £75 altogether! And I have to congratulate the Prince of Wales Theatre because, having worked front of house in the West End, we know just how difficult it can be getting a theatre that seats 1160 filled and seated in roughly 30 to 40 minutes! We arrived at the theatre and I needed to collect the tickets. This was done nice and swiftly, we were then passed over to a member of the front of house team, a young lady called Alice, who looked after us for the whole afternoon! She took us to the bar, came back and took us directly to our seats and showed Martin where to store the wheelchair. We had pre ordered drinks for the interval which Martin was going to go and collect, but just as the house lights came up, Alice was stood next to Martin with our drinks! She came and got us once the show had finished too and took us right out to the front doors. We really appreciated all that service, it's a theatre I would happily recommend as a disability friendly place.

That evening we had tickets to see Dirty Rotten Scoundrels. Unlike Mormon, we knew this show pretty well. We hadn't heard it for a while though so it was good to hear it again and to see it performed live. It has Robert Lindsey and Rufus Hound in the lead rolls. They were good and the whole show was well done but it didn't deliver quite the punch that Mormon had. Whether that was because we already knew it, I'm not convinced!
We had tickets in the Dress circle, I was transferring into the seat from my wheelchair again but access wasn't quite so easy for this theatre. We had to walk all around the back of the theatre to a side's not the theatres fault, they all have to fall in to line with the disability regulations but let's face it, these theatres are hundreds of years old, so it's not an easy task. Everything was done very well though, nothing was too much trouble for them. 
We paid £70.50 altogether for these tickets which was about the price of one of the seats where we had been seated. It was busy but not sold out. 
We had managed to park our car a few streets away from the Savoy Theatre, on the road in a Pay by Phone space. This literally means you can park in the space but it is easiest to have the app so that you can register that your car is parked at a specific location. This was the first time we'd done this so Martin had to phone someone but once we'd done that we were able to use the app to extend our parking time and check on how much it was going to cost. We'd parked around about 17.20 but you can park for free after 18.30 as long as you have registered your car! It sounds far more complicated than it actually is.......honestly! ;-)
That evenings parking cost us £4.79......just a little different to the afternoon! Lol! ;-)

Just one thing that I meant to mention was about the congestion charge. We were driving all around Central London on a Monday to Friday which meant that the congestion charge would have to be a consideration for us. However if you are disabled and are a Blue Badge holder then you are able to register your car with them, you pay £10 and your car is covered for the length of time that your Blue Badge is legitimate. At the end of that time period you will be sent a reminder to renew your details. As long as you renew within ninety days of the old one finishing then you don't pay any further money, otherwise it will cost you another £10. You are able to have two vehicles registered under any one Blue Badge. 

On to Thursday and after the manic day on Wednesday we had a quiet day on Thursday with nothing planned until going to the theatre in the evening. It was actually a God send because I was already feeling pretty exhausted by this time. 
Don't get me wrong, we were having a blast it's just my body doesn't play ball when I'm doing more than usual! 
The show that we'd booked to see that evening was a play called Ghost Stories. We were intrigued by it because you couldn't find any information, about the content of the show, online. Their website isn't very forthcoming, all you see are photos of people looking totally terrified! They have a thing called Scream cam. It is much like a camera that is set up to take a photo on a roller goes off at a certain point in the show and captures people at particular scary point in the show. 
Martin was quite taken with what the experience was about so we booked tickets for this play! 
It is on at the Arts Theatre which is just past Leicester Square. This is a lovely intimate theatre, so perfect for this show, and the tickets were really reasonable. The top price ticket was £39.50 so that was the total we paid as, once again, I paid for me and then my Carer......Martin, came in for free. 
The show is only about one hour twenty minutes too, with no interval, so a perfect evening out really! 
The major problem we had on this evening was that we hadn't left ourselves very much time to get into the centre of town, find a parking space and get to the theatre before the show started and of course when we reached the centre of London we couldn't find a parking space for love nor money!! 
We drove around for a good ten minutes getting ourselves tied up in knots and quite lost but there were no spaces whether they were disabled or to pay for! Of course we were getting quite irate....with London and with each other because we were cutting it very fine to get to the theatre in time. In fact Martin did say at one point that he thought we'd have to leave it and miss the play. 
We were both quite gutted but also annoyed at us for not giving ourselves enough time to find a space. And then my mum must have been looking out for us from up above because as we turned into St Martins Lane, which was just down from the theatre, we found an empty disabled parking space! We parked, got the wheelchair out and scooted up to the theatre with about ten minutes to spare.......thanks mum!! ;-)
We collected our tickets at the box office where we were told we'd need to pop back outside and just up the pavement to a door that the manager was going to open. We got back outside, onto the pavement where there were a group of people enjoying a pre show drink. I tapped one of them and just asked him to "Excuse me" He apologised and moved aside, once we were passed, I looked up at Martin to see if he'd noticed what I had......the guy I'd asked to move was none other than John Hannah, the actor! Even better looking in person too! ;-)
The play was fab, I found it quite scary, but then I fall for all the psychological stuff......the dark theatre, the spooky sound effects etc. I've worked in the business so I know what is real and what is engineered but my brain still likes to mess with me with things like that. Of course Martin is much more sensible and doesn't scare easily, so when I demanded his hand/arm for me to hold on to, I was given short shrift!! 
I won't be telling you anything about the play as I am happy to keep the shows secrets but I would urge anyone to go and see it, while it's still on, as it is a great piece of theatre.......just be warned if you are of a nervous disposition!! ;-)

And then here we were already on to Friday our last full day in London! 
Originally we were going to be coming home on the Friday having seen the three shows we had chosen to see with the money from Dream-A-Way but Martin happened to come across a show that is very close to both of our hearts and it was being performed in London while we were there! 
Martin and I along with some fantastic friends of ours have put on three concerts, over the last ten years, to raise money for the MS Society South Devon Branch. We have raised over £6000 by doing them! In 2004 we did a show called Closer Than Ever by Richard Maltby Jnr and David Shire. This involved four singers, a pianist and a bass player. In 2007 we put on a show by the same people but called Starting Here, Starting Now and in 2010 we put on Closer Than Ever again but we had seven singers this time! 
Martin was first introduced to Closer Than Ever when he was at drama school and it made such an impression that it stayed with him ever since. It had always been a dream of his to perform the show at some point! Of course this is how I found out about this wonderful piece of work and like Martin, I really thought we should perform this somehow and we managed it......twice and because of that it means a lot to us but although we had performed it neither of us had actually seen it done before! 
So when Martin came across the fact that it was being performed in London at the same time we were going to be there, we just had to get tickets.
It was on at the Jermyn Street Theatre, which is one I hadn't heard of. I rang them to ask about disabled access and I was glad I did! The theatre is actually in the basement of the building and the only access is down a flight of stairs. The lady who spoke to me was great though, she explained it all to me and checked to see if I could transfer and walk down the stairs etc. She explained that if we got there at 7pm, it started at 7.30pm, then they would store the wheelchair for me and give me any assistance I needed for getting down the stairs! She also said that once I was down in the foyer, they would keep the doors shut but let me make my way into the auditorium and get seated before they would let anyone else in! It sounded like they had everything covered so we went ahead and booked tickets for it! 
On the Friday we actually gave ourselves loads of time to get into the centre of London and to find a parking space. We didn't want a repeat of the previous night! As it was the Friday night traffic wasn't too bad and, of course, we found a disabled space on the end of Jermyn Street, just about 50 yards away from the couldn't have been more perfect or stress free to find it!! 
The theatre staff lived up to their expectations! Because we had been able to park so close I hadn't needed to take my wheelchair which was really handy as there wasn't really anywhere for it to go! You arrive at the theatre and immediately have to go down a flight of stairs. The lady I had spoken to had been looking out for us and true to her word she cleared everyone to enable me to get down the stairs safely. Once we were down there she took us through to the seating area, she had booked us the most convenient seats which were on the end of a row. 
The auditorium and stage area were tiny.......very intimate! It only holds 70 seats and the front row is literally on the edge of the performing area, but that was perfect for this show! 
When you know a show so well, it is very difficult not to sing along with the songs but Martin and I were very good and we just sang them in our heads!! It totally lived up to our expectations and was great to see it being performed. I got a little emotional at the end because the show means a lot to us and it just touches me so much!

So that was it! :-D
We returned to the Premier Inn at Heathrow, which was the cheapest of all of those we'd stayed in but probably one of the nicest too! And because we were out there it gave us a little head start on our journey home! I dislike London a lot since becoming disabled but if you take the time to plan and prepare it doesn't have to be a city to be avoided! ;-)
As always when we have been away, it took me about a week to get over our trip and although I got very frustrated and fed up with how I felt and how tired I was, it was totally worth it! We had a fabulous time and are so grateful to the Dream-A-Way charity, what they did for us was amazing and we will remember it for a long time to come! 

So, until the next time! :-D

Tuesday, 27 May 2014

London Bound! :-)

Martin and I have already had an incredible year but it is set to get even better this week when Martin and I head off to London for a few days to go and enjoy some West End Shows! But this has only been made possible due to us receiving another grant!

A wonderful charity called Dream-A-Way has given us a grant to pay for hotels and theatre tickets etc which is just amazing. 
Dream-A-Way is a charity based in Exeter that was set up especially to provide grants and funding to people with physical and learning difficulties across Devon, Cornwall and The Scilly Isles.

Martin and I are complete theatre nuts! 
We both trained at theatre schools in London and we worked professionally......It's actually how we met.......and then since moving away from London we have been involved locally in amateur theatre. We have always tried to keep up with shows in London though but it's become increasingly difficult partly because of our circumstances but also because you need to take out a mortgage to pay London theatre ticket prices these days! 

When we applied to Dream-A-Way we thought we may be able to see a couple of shows and pay for a night, maybe two, in a hotel but thanks to their amazing generosity, spending a bit of time sourcing cheap accommodation and getting some great disability rates on the theatre tickets we have got the most exciting week ahead of us! We will be away for four nights and seeing four shows......yes, FOUR West End shows! We can't believe it!! 😃
In fact if you include the National Theatre Live show that we are seeing at the cinema, this week, we will actually be seeing five shows! We are seeing The Curious Incident of the Dog in the Night Time at the cinema on Tuesday thanks to there being an encore showing of it.

Actually the National Theatre Live scheme is a brilliant way to get great West End productions out to wider audiences. After all, not everyone can get to London or afford the theatre ticket prices, so to have the opportunity to see a show, whether it's live or an encore showing, means that these shows are being seen by many many more people. We have, so far, seen The Audience and War Horse in this way and we will certainly be looking out for other productions in the future! 
Check out what's coming up at

And on to the shows that we are seeing this week. 
Firstly it will be The Book of Mormon at The Prince of Wales Theatre 
followed by Dirty Rotton Scoundrels at the Savoy Theatre 
The next evening we are seeing a play called Ghost Stories at the Arts Theatre
Then finally we shall be seeing a show that is very close to our hearts. We have performed it twice as fundraising concerts and Martin was in a production of it when he was at college in London, which is when he was first introduced to it but neither of us have ever seen a production of it, so when Martin happened to find out it was on while we are up there we HAD to book tickets for it! The show is called Closer Than Ever and is on at the Jermyn Street Theatre

It is actually very sad because the price of tickets to go to a show nowadays is so expensive. I remember when Martin and I used to work in theatres in London, there was a lot of bad feeling because tickets were reaching the £40 mark.......that was nearly twenty years ago though! These days they are pretty much double that amount, so for a family of four you are looking at anything from around £280.......just for one show! 
Most theatres have a special access telephone number that is a dedicated line to deal with customers who have disabilities. We have used this for all the shows we're seeing and the total bill for our tickets to see four shows in the West End is £235. This means that on average, it's costing £58.75 per show for both of us which is under £30 each.........that's more like it!! 😉

To say that we are really looking forward to going to London would be a bit of an understatement! Although having said that I am a little nervous! 
I'm so glad that we don't live in London any more and I feel that even more since becoming disabled........This trip will really test that too! We are driving up to and around London as we have registered our car for an exemption on the congestion charge! We have also bought a special accessibility map that shows all the car parks and Theatres and toilets etc, this will be really helpful as I am taking my wheelchair because we know I won't manage without it! 

And so we are off!! 😉😄

Thursday, 8 May 2014

FAMPRIDINE (Fampyra) and getting it available for everyone!

FAMPRIDINE (Fampyra) - How many of you have heard this name and how many of you know what it is or what it does?

I'd not heard of it until a very good friend of ours, who also has MS was telling me about it. It is the name of a drug that can be used to treat worsening mobility in people with MS. In fact it is the only known treatment that can improve someone's walking speed that has been affected by MS. 
There are a lot of symptoms associated with MS but most people won't have all of them. There are some that are more common than others though, that a lot of people will experience, for example, muscle stiffness and spasms. Worsening mobility and balance are also quite common symptoms. 

There are a couple of medications, Fampridine and Sativex, which are both known as SMT's or Symptom Management Treatments. These can help people to manage the aforementioned symptoms effectively which, ultimately, will allow people with MS to live fuller and more independent lives.
One of the issues with these medications though are that people's access to them are terribly low. The numbers suggest that as few as two percent of people with MS have access to these potentially life-changing treatments. 
Fampridine was granted a conditional licence by the European Medicines Agency in July 2011, which basically means that Biogen Idec, who manufacture the drug, has to carry out further research about the benefits and the long term safety of the drug. 
While it has this licence, it hasn't been approved by the National Institute for Health and Care Excellence (NICE) and so the NHS is under no obligation to provide it. NICE is currently reviewing the evidence for both Fampridine and Sativex.
Fampridine is considered a specialist treatment and as such NHS England (NHSE) is responsible for funding any prescriptions for it. NHSE’s current policy for Fampridine recommends against prescribing it routinely, which has led to particularly low access.

The draft NICE guidelines were published last week and do not consider there is sufficient evidence to warrant these drugs being available on the NHS. In addition they do not feel they are cost-effective.This is a devastating blow for people affected by MS, and the MS Society is gathering evidence to challenge these recommendations. 
Unfortunately time is very short - there remain only 5 weeks to formulate a reasoned challenge. Please consider making your MPs aware of the issues -you can contact them by going to the website ' If you or anyone you know has direct experience of these drugs - particularly anyone who is paying a private prescription, or whose consultant has suggested one or the other but where prescribing is pointless because of the problem paying, please contact as soon as possible.

What can you say to your local MP? Make them aware that access to a potentially life altering drug is only available if you can afford to pay for it. Surely if there's a treatment that can help and improve peoples walking and balance it will make them safer and therefore save money on trips to the doctors or hospital? Of course, those people who feel no benefit or who react badly to side effects would not continue taking it, thus minimising the overall cost.

There needs to be a fairer way to sort out what drugs are made available and for whom. It shouldn't be dependent on where you live or whether you can afford a treatment. If there is evidence to prove its effectiveness, it needs to be made available to everyone and on the NHS so that anyone who could possibly benefit from this drug can have their chance at a better life.


Saturday, 3 May 2014

MS Trust - Continence Question Time

This past week has been MS Awareness Week.

Back in March I recorded a Continence Question Time type of panel where there were three experts, a chair person and me.....The representative that has MS and has had experience with continence issues. 
The idea was to record a discussion about continence issues within people with MS and then to put them up on the website during MS Awareness week.

I travelled up to Letchworth, where the MS Trust is based and met with the other people involved. There was a Neurologist that specialised in Urology, an MS Specialist Nurse, a Bowel and Bladder care nurse and myself! 

The MS Trust had asked on social media sites what questions people would want to ask if they were in front of a panel of experts. People responded with questions and a handful were picked for us to talk about. 
We decided between us who was going to take the lead on each question. The cameras were set up, we were set around a table and we had an open discussion about the topics that had been asked of us. 

Listed below is the link to the video clips.........if these are symptoms you deal with, they could be useful for you.