Reflections on the National CP League

Last Saturday, saw the final fixtures of the National Cerebral Palsy League played at Mansfield Town FC’s new training facilities. Having retired from playing the beautiful game I’ve really enjoyed my role as assistant coach for Derby County Community Trust’s Adult Cerebral Palsy Team.

We finished a very respectable third place in the league, which for me is a fantastic achievement as the squad has very much been in transition as we’ve blended in a number of younger players into the squad as the season has progressed.

As a Sporting Ambassador for the charity Cerebral Palsy Sport I am particularly proud with the success of the league and the associated cup competition they have organised and facilitated. I am now looking forward to going to St George’s Park on 15th June to see Cerebral Palsy North West and North East and Yorkshire Cerebral Palsy Football Teams compete in the Cerebral Palsy Cup Final.

Preparations are already being made for next season with a couple of options currently being considered for the format of the league. Personally, I like the idea of there being regular Northern and Southern regional fixtures, complimented with intermittent national fixtures. However I think that a really important consideration is the location of fixtures as some clubs have struggled to pull together a squad of players where there has been a significant distance to travel.

For me a possible solution would be for a ‘central’ venue to be used which is roughly equal distance for each club to travel to for regional fixtures and then for national fixtures to be held at geographically central location, perhaps in Birmingham?

If there are adult CP football clubs around the country who are interested in competing in the National Cerebral Palsy League next season they should contact Richard Kerr at CP Sport in the first instance. His email address is richard.kerr@cpsport.org

The Adult CP Hub

This week I had the pleasure of meeting with Emma and Miriam from the charity, Adult CP Hub. Based in London they travelled up to Derby to tell me all about the charity’s aims and how I may be of assistance.

Emma, who has right sided hemiplegia, the same form of Cerebral Palsy (CP) as me was, until recently a speech and language therapist in the NHS, whilst Miriam is a physiotherapist.

We talked at length about the huge variations in the treatment options for adults living with CP, dependent upon where you live in the UK. It soon became apparent to me that the access I have to Dr Lin, a rehabilitation consultant based at the Royal Derby Hospital once a year for an ‘MOT’ is quite unique. Albeit this is something that I had to fight hard for some years ago.

So, the primary aim of the Adult CP Hub is to campaign for the NHS to adopt the guidelines for adults living with CP that were published by the National Institute for Clinical Excellence last month, setting out the ‘gold standard’ treatment options.

The charity also wants to establish a website which gives those with CP access to a wealth of information and provides details of best practice examples from across the country.

Emma and Miriam showed me the business plan for the Adult CP Hub, which contains some very exciting milestones. I went away from the meeting enthused and I now long forward to working closely with the charity.

It is most definitely a case of watch this space over the coming months #cpandproud 😊

Campaigning For Change

Given that I studied politics at university many moons ago, it is perhaps not surprising that I enjoy lending my support to a cause from time to time, to fight what I see as an injustice.
This time however, the issue really is personal. As I wrote a couple of weeks ago, the National Institute of Clinical Excellence (NICE) has published guidance relating to the treatment, care and support for adults living with Cerebral Palsy.
Whilst for me this was an extremely important moment in my life, as never before had such guidance existed, sadly the announcement hardly created a ripple in a media world that remains obsessed with the Brexit ‘circus’ which is currently playing out.
Anyway, not to be deterred I felt a responsibility to help campaign for the NICE guidelines to be acted upon and implemented by the NHS.
Today I met with Chris Williamson, my constituency MP to talk through the issue with him. He listened intently, and agreed to help facilitate a meeting in Parliament with his colleague Marsha de Cordova, the Shadow Minister for Disabled People for myself and representatives from the Adult CP Hub to bring the matter to her attention.
I am now looking forward to meeting with Emma and Miriam from the Adult CP Hub next week to bring them up to speed with the exciting development.
For me the issue is simple, access to services for adults living with cerebral palsy should not be a ‘Postcode Lottery’.
I am optimistic that we can bring about a positive change for the many thousands of adults living with CP across the UK.
I remain CP and Proud 😊
https://www.nice.org.uk/guidance/ng119/chapter/Recommendations

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.