New Guidelines for Adults Living with Cerebral Palsy

This week I was interested to read the new guidelines published by the National Institute for Health and Care Excellence (NICE), aimed at addressing the variation in the provision of adults living with cerebral palsy.

From personal experience I well remember reaching sixteen years of age and suddenly realising that appointments with my consultant and regular physiotherapy were no longer automatically available to me, now that I was entering adulthood.

Since then (I’m now almost 44) I have been able to access physiotherapy on a sporadic basis and for around the last 10 years I’ve been fortunate to have an annual ‘MOT’ with a rehabilitation consultant at the Royal Derby Hospital.

Thankfully I’ve also been able to have a new splint every 18 months or so from the Orthotics department.  This aids my walking and my balance.  Indeed, I had a new one fitted on Wednesday and for the first time ever it’s got a transfer on it – football related, obviously!

Anyway, back to the new guidelines – the aim of them is to help local and regional services provide consistent and clear pathways of clinical and social care to tackle the current variations which exist across the UK.

The guidelines include;

·         A recognition that there needs to be clear, supported transition between children and adult services

·         The recognition that the needs of adults with Cerebral Palsy can change over time, necessitating regular reviews where appropriate

I am hopeful that these guidelines will act as a catalyst for recognising that people with cerebral palsy require their own bespoke services.  It is now down to the NHS Clinical Commissioning Groups to act swiftly in implementing the recommendations.

I look forward to working closely with the Adult Cerebral Palsy Hub in campaigning to ensure that the NHS fully embraces the guidelines published by NICE.

 

 

Thoughts At Christmas

With Christmas almost upon us I thought that I would take the opportunity to reflect on what has probably been the toughest year of my life.

To say that there have been challenges really is an understatement as I’ve battled with mental illness.

The year began with me experiencing high levels of anxiety meaning that it was necessary for me to take several weeks off work to get myself ‘right’ again.  On returning to work I still felt fragile but hoped that the routine would aid my recovery, which to an extent it did.

In May I travelled with the Derby County Community Trust to Kenya to spend two weeks working in a school in the slums.  The experience was incredible and one which will live with me for the rest of my life.  It was challenging both physically and mentally and so I’m proud that I got through it.

However, on my return to the UK it was clear that my mental health was poor.  I started a new role at work but lasted only three days before experiencing a ‘breakdown’.  Several weeks later I was back at work on a phased return but very quickly my anxieties became unbearable.  I decided that I couldn’t go on and planned to end my life.

Thankfully I didn’t and following an emergency appointment at my GP surgery I was referred to the Mental Health Crisis Team who carried out an assessment of my needs which lead them visiting me at home every day for a week and a half. 

During that time, I saw a psychiatrist for a two-hour appointment during which it was agreed that I needed to stop taking one of my medications as it was probably contributing to my anxieties!

The next few weeks were a bit of a blur but very quickly I went from the depths of despair to being in an extremely manic state.  I returned to see my GP who made an urgent referral for me to be seen by the Mental Health Team.

A couple of weeks passed before I had an appointment with a CPN.  Whilst he was not able to give me a conclusive diagnosis, the CPN felt that I had Bi Polar Type 2.  The following week this was confirmed at an appointment with a Consultant Psychiatrist.  He prescribed me a low dose of an anti-psychotic to take alongside my anti depressants.

Within a few weeks I began to feel significantly better in myself and I returned to work at the beginning of November.  I’ve not had a day off sick since and I’m hopeful that I’m finally on the medication I should probably have been taking for all of my adult life.

And so, Christmas is here and I plan to make it a memorable one (albeit alcohol free) with my amazingly supportive family. 

Merry Christmas to one and all and I wish you a fantastic 2019.

 

 

Hemi Hearts Visit St George’s Park

Yesterday I visited St George’s Park with some of the families who are part of Hemi Hearts, a local organisation of which I’m proud to be the patron.

We were there to watch the England Cerebral Palsy squad training as the preparations began for the CP World Cup which is being held in Seville, Spain next summer.

On arrival, we were greeted by Jeff Davis, Head of Disability Football at the FA and Matt Crossen, captain of the England Team.  We were then led over to the Paul Ince pitch which was in perfect condition as the pitches always are at St George’s Park.

The players trained for around an hour and a half and it was great to see some familiar faces, along with a number of young players who have recently broken into the squad.

The Hemi Hearts children and their parents looked on and were clearly very impressed by the standard of play.  Towards the end of the session the children were allowed to have a kick about to the side of the pitch.   This certainly increased the levels of excitement, with beaming smiles a plenty.

As the training session drew to a close, the England players chatted to the children and their parents and lots of photos were taken.

All in all, we had a fantastic morning.  We hope to return in the new year to watch England play a friendly match as their tournament preparations continue.

 

Purple Light Up

On Monday of this week I celebrated UN International Day of Persons with Disabilities (IDPD).  This year saw me support the Purple Space ‘Purple Light Up’ campaign  (www.purplespace.org/purple-light-up) which seeks to encourage organisations to illuminate their buildings purple or hold a purple themed event in recognition of IDPD.

To that end I spent the morning at West Park School, where a series of activities had been organised. 

First up I delivered an assembly to the Year 7 pupils, many of whom were wearing purple accessories. As part of my presentation I showed the fantastic video made by Channel 4, who for the past few years have been excellent in promoting disabled people in a positive light.

Next up was a question and answer session with a group of students with special educational needs, which involved much discussion about my Olympic Torch which I’d taken into school.

At break time I found myself in the sports hall where a penalty shootout and basketball demonstration were taking place.  I couldn’t resist the temptation to take a penalty and was mighty pleased (and relieved) to score!

As my visit drew to a close, I did another question and answer session, this time with representatives from the School Council.  We discussed lots of topics including how I dealt with being bullied at school, my England football career and even my favourite fast food.

Before I left school there was just time for an interview with BBC Radio Derby.  I was asked by the reporter how I felt my visit had gone and as I told him, it really couldn’t have gone any better.

Later in the day I headed to Derby City Centre to see the Council House in all its glory as it was most appropriately lit in purple in recognition of UN International Day of People with Disabilities.

 

 

YMCA Derbyshire Community Meal

On Friday I was delighted to be invited to speak at the YMCA Derbyshire where they were celebrating the one-year anniversary of their community meal.

The meals are held at the London Road Campus on the last Friday of every month and are delivered in partnership with Head High, a new mental health community organisation.

The aim of the meal is to allow people in the community to come together, get to know each other and feel a sense of belonging. Each month local businesses and organisations are invited to send over a group of volunteers to help run the event.

This month a team from Santander were on hand to help serve the meals, ably assisted by Derbyshire cricketers, Matt Critchley and Alex Hughes, along with myself.

In a packed room, filled with enthusiastic conversation, the guests enjoyed a meal of chicken or chickpea curry, followed by bread and butter pudding.

It was clear that a healthy appetite had been built up by those who had been on the pre-meal walk led by staff from the Derby County Community Trust!

At the end of the meal, Gillian Sewell, Chief Executive of the YMCA Derbyshire announced that the 1000th community meal had been served and a cake, kindly dominated by Tesco celebrating the one-year anniversary was cut.

I was then asked to give a presentation on my trip to Kenya with the Derby County Community Trust earlier this year. This concluded with me showing an image of some of the children at the school where I volunteered, acting out the ‘YMCA’ as a thank you for the kind donation given towards the cost of my trip.

In ending my talk, I described my own battle with mental ill health and how anyone can be affected at any time in their lives. It was the first time I’ve spoken publicly about my illness, but I felt comfortable in doing so in such a supportive environment.

Congratulations to the YMCA Derbyshire, working with Head High on establishing the community meal and long may it continue.

Down But Most Definitely Not Out

So yesterday saw the Derby County Community Trust Adult CP Team travel to the beautiful City of York to play two regional fixtures.

Having spent a couple of hours on the road we arrived at our destination, the York St John Sport Complex a great new facility, which scored particularly high in my eyes as it has a Costa Coffee Shop.

Back to the football and we had our own spacious dressing room, with a welcoming sign on it, a lovely touch from our hosts, North East and Yorkshire CP Team.

On the pitch our first fixture was against Cerebral Palsy North West, whose team included George Fletcher, a current England international. In a very physical encounter, we held our own for large spells of the game before eventually going down 2-0.

Our goalkeeper, Freddie Lamb was in sparkling form, making a number of crucial blocks and saves, including one from the penalty spot.

Following defeat, we regrouped and readied ourselves in preparation for our second game, against the hosts.

An entertaining game saw us create numerous chances which on another day would have seen us score several goals but unfortunately despite our best efforts, North East and Yorkshire CP ran out 3-0 winners, which included a rather fortuitous opening own goal.

Despite the disappointment of losing both games, I really cannot fault the effort of the boys. We are a young squad who I believe have a very bright future ahead of them. Jordon Taylor, at just 17 years of age worked tirelessly on the wing before playing centre forward towards the end of our second game.

Meanwhile Dan Hardy, who has recently turned 18 continues to impress and his versatility of being capable to play in several different positions is of huge benefit in the 7 a side form of the game.

Owen Millington, another teenager is maturing into a very strong defender, whilst in Freddie Lamb we have in my opinion one of the best CP Goalkeeper in the country.

We may not have got the results we desired but our players still have every reason to have their heads held high.

UN International Day of Persons With Disabilities…it’s almost upon us

UN International Day of Persons with Disabilities (IDPD) is fast approaching and will be celebrated on Monday 3rd December.

This year I am supporting the Purple Space ‘Purple Light Up’ campaign (www.purplespace.org/purple-light-up) which seeks to encourage organisations to illuminate their buildings purple or hold a purple themed event in recognition of IDPD.

Locally in Derby, the City Council will be focusing on the ‘purple pound’ and the refurbishment of the Market Hall.

On 4th December Mik Scarlet, a nationally renowned inclusion and equality trainer, who also happens to be an award-winning British television presenter, actor, journalist and musician is visiting Derby. He will deliver training disability equality and inclusion to all the architects and designers involved in the Market Hall project so that disabled shoppers and disabled stall holders can shop/work there in the future without any barriers.

On the evening of 3 December, the Council House will be lit up in purple and we are hoping that local businesses across the city will join in too.

Meanwhile Derby County Football Club has a number of exciting plans to promote IDPD at its home fixture on 1st December v Swansea.

On the day itself I will be at West Park Community School in Derby and will be involved in a series of activities as the pupils and staff ‘go purple’ for the day.

My ultimate aim is to turn the Palace of Westminster (Houses of Parliament) purple, but this remains a work in progress!

Previous IDPD blog:

https://leonslog.home.blog/2018/10/22/international-day-of-persons-with-disabilities/