Scotlands Carers Parliament, difficult decisions and Respite too...

Hi guys, it's been a busy week!

The sun has returned so it's also been a sunnier, more positive time too! Isn't if funny how a little sunshine can brighten the mood? I always find grey days make for even greyer moods so I like to catch the best of the sunshine anytime it pops up really!

The Carers Parliament is on Tuesday, it's the second time Carers from all over Scotland have come together to discuss the issues they face and lobby our government for a better deal.
I'm not making it to the Parliament this time as I'm...double booked!

I found out Jesus Christ Superstar was coming to the new Hydro in Glasgow.
It's only playing for one night and Coo and I have wanted to go for years so I booked it way back in January!


Once this years Carers Parliament date was confirmed, I knew it would be difficult to say the least! I thought hard about things, tried to find a way around it, to jam it all into the box and I nearly tried to do both too but...sense prevailed! lol
I decided, if I cancelled and went to the Parliament, Coo would be disappointed and for that matter, I would too! I eventually made my mind up and decided not to try for a Parliament place this year. It was more important for Coo and I to have our respite break and continue with our plans.

I had a wonderful time at the Carers Parliament last year! I spoke out, shared a little of Coo and I's journey so far and pushed for changes I felt were important for all Carers!
So...
Good luck and a big 'go get 'em' to the Carers from all over Scotland who are making their way up to Edinburgh on Tuesday.
Have a great day and have a brilliant Carers Parliament!
(((hugs)))
Maz x

Carers and Angels with only one wing...

Hi guys, yet again this wee quote has found me...

We are each of us angels, with only one wing. We can only fly by embracing each other.
Luciano De Crescenzo
It's such a pretty verse, I think it's so apt for Carers and I guess I just find it so very comforting. What's more, I seem to come upon it when I need it for some reason...Kismet I suppose or even divine intervention!

I honestly feel, it's by working together we achieve great things and however difficult things become...there's always a way, the trick is finding it! lol

So many of my Carer friends are struggling at the moment. The Welfare Reform laws and the hated 'Bedroom Tax' are biting hard for most disabled people and their Carers and it's causing such stress and hardship for people, who are at best in an already financially precarious position. Add this additional financial burden and stress, to the impact of caring full time for a loved one with complex health needs and it doesn't take a genius to work out it's a recipe for disaster! So just why doesn't our government see it too?
I'm trying not to be cynical but it's a damning indictment that the DWP took to Twitter today, to tell us all how fair their policy really is and how it's all so very necessary but for disabled people and Carers like me, struggling at the sharp end of these law changes, it's so very damaging, difficult and soul destroying at times!

Coo's still poorly but thanks to our SDS (Self Directed Support), Looby came to keep Coo company for the day and I made it up to Edinburgh as planned, for the 'Carers Forum on Welfare Reform' .

I'm glad I went, it's interesting to see how other areas are dealing with these changes too.
Wherever we find ourselves, we need to stand up and speak out for those who can't, learn to put differences aside and work together for change!

Stay strong where you are, don't give up whatever you do!
(((hugs)))
Maz x

Hoping for more settled times...

Hi guys, it's been a bit of a struggle again here this week.

I've had to dig out my hard hat and flak jacket again as Coo is poorly! His meds change of a few months ago, has caused some on-going problems and he's struggling so very hard this week.

Coo's core drug Epanutin was discontinued earlier this year and after a trying time, phonecalls back and forth to both Epilepsy Scotland and our Doctor and Coo's Neurologist, we discovered the drug was being made by another company and under a different name - grey area if you ask me! Anyhow, we chased it down and moved on but Coo's struggled more than usual over the last few months and he is convinced it's down to a change in the drug manufacturing process!
Now, I'm not so sure, we've had a lot on our plate recently with baby Jessie's Hip Dysplasia and surgeries and Coo's been so stressed too so all that could be impacting on, what is, a very precariously balanced seizure struggle at best but on the other hand, who really knows? He might be right! All I know is, it sure has been a struggle - that's for sure!

What to do?

Well, firstly we need more blood work done, just to see exactly where those drug levels are sitting on the safe range and then we will see.

Our GP thinks the additional seizure activity is probably due to stress and it may well be but one things for sure, with Coo struggling as he is currently, we need some questions answered. The Neuro is probably best placed to answer them so I've a feeling another hospital run is on the cards for Coo and I.

I'll hope for more settled times for us all and I'll keep you posted!
(((Hugs)))
Maz x

Timeout, Anti-Bedroom Tax and the U.N. reporter...

Hi guys I've been on a wee overnight away with Coo!

I always like to make sure Coo and I do something together when I come back from my Respite break so with Joseph, being on in Glasgow at the Kings last week, just what to do was an easy choice this time around!

It was brilliant!
Great fun and a great show too - Coo and I had a blast!
We had some luck too, we usually sit in the circle part of the theatre but it was closed that evening and we got a free upgrade...Result! lol

When we came back, I discovered I'd been invited to speak to the United Nations Reporteur currently here in the U.K. assessing the effects and issues surrounding the hated 'Bedroom Tax' legislation. - of course I agreed!

I am both saddened and angered in equal measure around the issues and damage this piece of legislation has brought into the homes of the most vulnerable people in our society. So many people affected in what is already a so delicately balanced, precarious and difficult situation at best.
It truly is, only an uncaring government that could and would inflict this type of damaging policy on it's own people.

My report and case study has now been submitted to the United Nation Reporter and I only hope in some small way, it helps speed the demise of this abhorrent  policy and the sooner the better!

If you're asked to speak out, please take a deep breath and just tell them how it really is!
It's only by working together we can make a difference!
(((hugs)))
Maz x

Respite's so important for Carers...

Hi guys, I've been away for a few days respite - woo hoo!

I went to Blackpool! It's my usual choice, for a few days away and my mum comes along to keep me company.
Although not everyone's cup of tea, it suits me just fine, I can go shopping, tour the lights, have a whirl on a tram and best of all, I can sleep for three whole nights in a row...Woo hoo!
Now, most people take this kinda thing for granted but it's not so for Carers!

Most of us really struggle to get enough rest and tiredness is usually a Carers constant battle!
We are so lucky to have an SDS (Self Directed Support), care package in place. It means we don't have to panic about funding when things are tough and I need a break. We access the funding, sort out additional care (Looby comes to stay with Coo while I'm away on Respite) and I just...book a break!
Being so much in control and having choices, has made all the difference in the world for Coo and I!
so Mum and I...
shopped till we dropped, drank tea and ate cake in numerous tea-shops, slept in cosy beds and had some fun, in fact...it was great!

I found a craft shop too!
I picked up some lovely Christmassy fabrics and guess what? While speaking to the wee man in the shop and on finding out I make patchwork baby quilts, he insisted I take one of his sample books for free! How cool is that!

All-in-all I had a brilliant time and have come back all zingy and refreshed and ready to take what life throws!
I only wish all Carers had access to some respite, it's the glue that holds things all together and helps us Carers to continue, in what is always a challenging role!
(((hugs)))
Maz x

NHS, Review, Support & Action...

Hi guys, I've been busy!
Things have moved on apace with our NHS and Hip Dysplasia issues and thank goodness for that!

We (Looby & I), had a meeting yesterday with NHS people from both Community Nursing & Pre 5 Childrens Services and Midwifery, to discuss the issues raised at the NHS annual review.

We raised our concern and said we really felt, there was a lack of information surrounding Hip Dysplasia (DDH) in general - just what do you need to look for?
We discussed how this could be addressed and improved and I'm pleased to say, actions were discussed and agreed surrounding further training for staff, additional awareness raising and general public information sheets & posters.

Best of all, they agreed to supplement the information given to new parents to include a wee section on Hip Dysplasia symptoms and what to look for as we had suggested. We thought the most helpful information would be, letting people know to check the wee fatty folds are symmetrical on the baby's thighs. It's a clear visual marker the hips are displaced and could need attention and it's so easy to see.

Sadly, we only found this out, while searching for support after Jessica had been diagnosed at aged18 months! We quickly realised to our horror, we had noticed this with baby Jessie as early as the first four weeks after her birth and thought she was just a 'wee chubby baby'- we just didn't know it was a problem!

With the additional training for staff and the proper info on the signs to look for given to new parents, hopefully we'll start to catch these wee people quickly and really avoid the need for painful, invasive and expensive surgeries and...if this happens, I will be a happy Maz...in fact, we'll all be happy!

(((hugs)))
Maz x

Disappointed.com...come on NHS!

Hi guys, I'm on the case again!
Remember when I posted recently about raising an issue at our NHS annual review? It was regarding the lack of information from NHS on Hip Dysplasia.

Well...I'm disappointed.com!
The NHS people have not bothered to contact me or update on this issue so...I decided to give them a wee reminder in the hope they will move quicker and in the right direction!

First I contacted Public Health Minister Michael Matheson, (he hosted the review!), just to let him know, I had not yet had any further contact with NHS. Then I emailed the only Health board contact I had and asked for some help tracking down just whom should I be talking with - I'm nothing if not resourceful!

I hope they are taking this issue seriously as with four in every thousand babies born with Hip Dysplasia that's a lot of wee people with hip problems that need checked and if they're like baby Jessie and missed at the start, parents need to know the symptoms and just what to look for!

It would be nice to hear from them soon, one thing's for sure...
I'm not giving up - it's just too important!



Remember just like their logo says the NHS belongs to us all!
If you come across something you're not happy with, particularly if by intervening you can save someone else from pain, take a deep breath and...challenge, challenge, challenge!
Keep strong,
(((hugs)))
Maz x