At Holyrood for MS Awareness Week

I was asked to speak at Holyrood by the MS Society about the importance of MS Nurses last week. Had never actually been to the parliament building so it was a wee adventure. This is the speech I gave

“Hello and thank you for inviting me here tonight to speak about my experiences of the MS Nurses and the important role they have played in my life.

I was diagnosed with RRMS 13 years ago when I turned 20. I’ve been lucky in the sense that I still see the same neurologist and MS nurses now at the Anne Rowling Clinic at Little France as I did when I was first diagnosed in 2004. Stress has always heavily affected my MS by exacerbating previous symptoms and causing fatigue, and so having the consistency of the same MS Nurses reduces my worries when I am meeting them for appointments, as they are familiar with my medical history and aware of how having MS has affected me both physically and mentally.
I’d like to share with you some examples where they have provided me with advice over the years and where I feel they have gone the extra mile to provide me with the support I need
I see the MS nurses 4 times a year but due to the unpredictable nature of MS there have been quite a few times that I have needed help inbetween these appointments. One of the more recent examples of this was when the vision in my left eye suddenly became blurred and my eye became extremely painful. I was able to call and leave a message and one of the MS Nurses called me back within 24 hours. I described to them what was happening and they asked me to come into the MS Clinic to see them the next day. Once there, they had me go for an eye examination which quickly showed that I had a case of optic neuritis. They then arranged for me to meet with my neurologist where we discussed moving onto new medication to better manage the MS. All this was done within days of my original phone call. Again, the speed with which they act can help contain some of the stress and the worry when new symptoms like this just suddenly appear.

During my appointments, we have discussed issues such as stress and pain management and physiotherapy. Because the MS nurses keep aware of the various groups that are around the area, they have been able to suggest organisations who can help with these things outwith the NHS as well as within. This can also reduce the time it takes to start these kinds of programmes. MS can affect people in so many different ways so that not all MS sufferers will have the same symptoms. This means that MS Nurses need to have a wide range of knowledge so they can offer the best support.
I was also able to go to them with my concerns when I had to move from DLA to PIP at the start of 2016. They were able to share with me what they knew about this new system and what kind of information I would need to supply with my application. I was able to rejig my appointments when I did not receive the mobility component until I could get someone who would be available to drive me in. I got my car back, but that’s a story for another day.
Through speaking to others and researching it myself, it is clear that MS specialist nursing needs to be resourced to a better level. The fact that my nurses are doing such a great job in spite of the number of cases they have only goes to prove how committed and passionate they are about taking care of and supporting their patients. Hopefully all MS sufferers in this country can have that same care we so badly need.
Throughout all these years with my various relapses and unexpected problems, they have never ever made me feel like I am wasting their time. They always listen to my concerns and address them, looking for ways to make things better and easier for me. I owe them a great debt of gratitude and I really do not think I would cope as well with MS as I do if I did not have their support.
Thank you for listening.”
I hope my story went down well with all who attended and that the MS nurses in Scotland get the help they need so they can give the help and support people like me need on a daily basis.


Coping with hypocrisy!

I don’t tend to get political on this but what the hell is going on??!!

Just to state I voted for Scotland to remain in the UK and voted for the UK to remain in the EU. I am now though heading towards voting to leave the UK. Not necessarily to try and get back into the EU, I’d rather be in the EEA, but because of the disdain shown to Scotland by Westminster!

Scotland is told it should stay under Westminster rule so that we don’t leave our biggest trading partner because of how economically damaging it would be, whilst at the same time told by the UK that leaving the EU and the worlds biggest single market will be fine. What??!

Scotlands told we need to have answers before holding a referendum, but no answers or plans were/are needed before and after a referendum to leave the EU. What???!

Britain voted to regain sovereignty over its parliament whilst now telling us that a democratically elected Scottish parliament will not be listened to about calls on dates for a referendum. Seriously WTF???!

I never have, nor ever intend, to vote SNP. The simple fact is I don’t think they should build an independent Scotland in their image. In the event of a Yes vote, parties should set out their manifestos on how they would design Scotland and a new election should be held. Pretty much the opposite of what Westminster has done!

I cannot stomach double standards. All the arguments to leave the EU are now the reasons given to remain in the UK. What??!

We were told all devolved parliaments would be spoken to in order to plan the best Brexit possible for everyone but so far we have not been listened to. The “vow” for what Scotland would get if we remained in the uk 3 years ago have still not been fulfilled. The promise that only a no vote in 2014 would keep us in the EU proved meaningless. So can anything Westminster say be taken as truthful where Scotland is concerned?

I stand by my vote to remain in the uk. It was the right decision at the time. But times have changed. When you see what the conservatives have done to the disabled in this country and realise that they are there for decades thanks to an incompetent Labour Party, it is clear how they view the people who put them into power!

The hypocrisy needs to be taken out of the argument and pointed out each and every time, which is about every 5 minutes. If the SNP truly want an independence vote to go their way, then promise to call an election after the vote so that we, the people of Scotland, can choose the parameters of our independent country!

The proof is in the pudding!

Exciting week with my latest chat to the press about how important the motability  scheme is to people like me. Nice wee section on reporting Scotland and BBC Radio Scotland so good they are still interested and hopefully Holyrood was paying attention with the welfare powers moving north soon.

Had a good strong start to the year getting a good amount of time in the office, but this week things outwith my control pop up. I get a bloody cold

Can’t fully express what this does to my body! My legs go where they please, they give way under the weight of my body (thank god I’m not bigger!) and my arms don’t want to lift a pen never mind anything heavier. Whole body just feels so tired like I’ve spent a week hiking through the jungle or something. 

So work has kinda been cut this week it takes so long to wake my body up enough to deal with the day. And this is where having my car back is just a blessing! I’d have no way of getting to work on my own in the middle of the day but having the car means my day isn’t just wasted. It also mean I can cope with getting less money and not worrying about someone coming to pick the car up. I went to work yesterday for 11 and today I got in for 1. I lose hours but it means I can do my bit, pay my rent and pay my taxes. All the things Society got billed for when my independence was taken away from me!

So my weekend will be spent barely moving to try and shift this damn cold. It’s the little things that’ll knock you down. Hopefully next week runs smoother and I can make up some of the missed hours.

People are still listening and still hoping for change!

Been a busy start to the year so I’ve been totally shattered which is why I’ve gone quiet lately. My story and the chaos PIP caused me is still popping up which resulted in BBC Scotland contacting the MS Society to get my details and arranging to come out to speak to me today.

They are focusing on the “welfare” powers moving to Holyrood this year and wanted a bit of background on what had happened to me, the effect having the car taken away from me had for those months leading up to the appeal and the difference having the car back has made. They also wanted to know what I hoped Holyrood would do different.

Was only a 10 minute chat but think I can only remember about half of what I said 😂 I’ve had the conversation about what I think is wrong with PIP constantly going round my head since I got the dreaded brown envelope (I have good chats with myself) so I’m fairly certain I didn’t ramble too much and positive I successfully avoided the urge to swear when talking about the DWP!

They interviewed some other people so they’ll be putting it all together over the next 2-3 weeks so I’ll let you know when it’s scheduled to be shown or be on the radio. I’ll be interested to see the similarities and differences in other people’s experiences of PIP.

I can only hope my words will be helpful to those still going through it and help others realise just what the DWP are doing to the most vulnerable in this country. I had said to them that I felt I was being punished by them for having MS. As if actually having something like MS wasn’t bad enough. No one should ever have to feel like that! 

Please, please, please Holyrood, learn from Westminsters mistakes and make sure we never feel that way here again.