We’re delighted that Calderdale Council has signed up to the MND Association’s MND Charter.
We spoke to the Council’s Health & Wellbeing Board about why it matters and how we can lead the way as we #ChampionTheCharter.
Our Chair Stephen Naylor spoke to the Board on Thursday, 20 February – this is what he said:
Thank you for giving us the opportunity to speak to you about Motor Neurone Disease, the MND Charter and our work.
We are delighted that Calderdale has adopted the MND Charter and thank you for your support.
Firstly, I wanted to introduce myself and The Nick Smith Foundation, which I know some of you will be aware of.
The Nick Smith Foundation was founded in May 2018 following the death of Nick who was just 38-years old.
He was a father of two young children – Hadyn, then aged 5 and Georgia, then aged 2. He was my brother-in-law – I’m married to his sister Helen.
Nick, a former Calderdale Council employee, lived in Lightcliffe with his wife Rachel, a current Calderdale Council employee, and in September 2017 he was diagnosed with Motor Neurone Disease. Just 101 days later he died.
Rachel, and I were determined to ensure his legacy would live on and began work not long after his death to put together a registered charity.
That’s not an insignificant task and to this day we are all volunteers in our small but effective charity, all just passionate about ensuring Nick’s legacy, we spend next to nothing on running the charity, it all goes to our aims.
The Foundation has three aims – helping to find out more about the awful Motor Neurone Disease, supporting children who have to face the death of a parent at an age no one should have to deal with such a loss, and encouraging more young people to take up rugby league and supporting those who do to continue with the sport Nick loved.
So, to the MND Charter itself…
Run by the MND Association, we fully support the aims – the five points of which are fairly simple.
They are all about the respect, care and support that people living with MND and their carers deserve and should expect.
The five points of the Charter are:
- The right to an early diagnosis and information
- The right to access quality care and treatments
- The right to be treated as individuals and with dignity and respect
- The right to maximise their quality of life
- And, carers of people with MND have the right to be valued, respected, listened to and well-supported.
We support this so much because our tragic experience shows a real gap in the support and care available.
Having lived through the pain of seeing Nick diagnosed and then, all too rapidly, being killed by Motor Neurone Disease we knew there was a need for more to be done.
It’s no understatement to say we did not have the best experience when Nick received the horrific diagnosis and then all the way through to his death just those three short months later.
The lack of co-ordination between the NHS, social care and other organisations concerned us and it’s one of the other elements we are hoping to improve.
Because, we also know it’s one thing signing up to something, it’s another for there to be a difference made.
We believe Calderdale can be a real leader in the support of those diagnosed with this awful disease and we’d like to help achieve that.
So, what can we do – well we think there are a number of ways…
Firstly, the co-ordination of care.
MND is a condition that devastates.
It devastates an individual who with absolute and heartbreaking certainty knows they are dying with the condition, not living with it.
It devastates their family and friends who don’t know where to turn, don’t know how long they’ve got and don’t know what to do.
What those with MND do not need is a battle to get the care and support they need – whether medical or practical.
In Bradford, they have an MND co-ordinator who is employed to bridge the gap, to liaise between the agencies, to make a real difference. One person who knows which strings to pull, which questions to ask.
We need the same here. I understand Calderdale and Huddersfield NHS Trust are investigating this following pressure from ourselves and others, we hope you can support those efforts – not financially, we are prepared to do that, but through your actions and words.
And this role and its impact and aims can be all encompassing – when Rachel was looking into grants from the Council to support her and Nick adapt their house so Nick could continue to live at home, there was too little support and too little prioritisation. Nick, as with too many MND victims, had weeks not months or years. Yet the system did not factor that in. We think it should.
We also want to focus on not just supporting the individual with MND but supporting their families.
Nick had two young children. He’d worked in local government, he worked in the third sector. But he didn’t want to admit what was happening, he didn’t know where to turn.
Rachel, his wife, works for this Council, she’s an amazing, clever, women who didn’t want to comprehend a life without Nick and didn’t know where to turn for support with their two children, Georgia and Hadyn.
That’s one of our aims too – to support the individual by supporting their family who – really – they care about more than themselves, both pre-bereavement and after death.
We’re working and about to launch lots of ideas
…from memory boxes that allow those with terminal illnesses to create memories that can be kept long after they’ve gone, and which present an easy to use resource at a time when you don’t want to think about the future…
…to bereavement support and counselling particularly focused on young people. This is something which is all too rare. Hadyn managed to access a service and we’re supporting more accessibility for children across Calderdale to get help through play and craft.
We would welcome your support to promote those efforts so that Calderdale becomes the leader we know it can be.
The generosity of those who knew Nick, those who knew of Nick and those who had no involvement with Nick but support our aims has been humbling.
Support has come from a huge number of sources across Calderdale and beyond.
MND is a brutal disease. Indiscriminate. Inexplicable. Incurable.
By signing up to the Charter, you’re already making a difference.
But we want Calderdale to be more than a tick on a map, we want to lead the way.
Because Nick was born, bred and died here. We’re all passionate about this amazing place we live and work. We know Calderdale can stand out, be known and be distinctive.
Vision 2024 is all about being a place where we realise our potential, making sure every voice is heard and where people can be full of hope.
And, despite everything, we are hopeful.
We hope one day that no-one dies from MND.
But before that day, we hope that others do not suffer in the way Nick did.
We hope they get the joined-up care and support that Nick did not receive.
We hope their family and friends know where to turn at a time when you don’t want to think at all.
We know we can achieve that in Calderdale.
For Nick, for others, for us all.
Thank you for your time, thank you for signing up to the Charter, and we really hope you can help.