More support for patients with Motor Neurone Disease in Calderdale and Huddersfield

Patients with Motor Neurone Disease in Calderdale and Huddersfield will receive more support in the future as a new co-ordinator is recruited to bring together help and services for those with the condition.

The role is being jointly funded by the Calderdale and Huddersfield NHS Charity and The Nick Smith Foundation with the 2-day per week role employed by the Calderdale and Huddersfield NHS Foundation Trust.

The co-ordinator will initially be in place for two years to assess the role’s impact. It aims to provide patients with a single point of contact, ensuring there is a joined-up approach to care plans and unlocking and signposting extra support for those diagnosed and their families.

Lucy Pittaway, Deputy Director of Operations of the Calderdale and Huddersfield NHS Foundation Trust, said:

“This is a great opportunity for us to learn from best practise across the region and implement a co-ordinated, multidisciplinary approach to support patients diagnosed with MND. 

“The aim is to show the quality benefits of this model and secure recurrent funding to embed this as a permanent service in the future for our community. I cannot thank The Nick Smith Foundation and our NHS Charity at Calderdale and Huddersfield NHS Foundation Trust enough for supporting this new role and service provision.”

An MND Services Steering Group will monitor the impact of the role. It will meet every quarter with the MND Co-ordinator and will include a representative of The Nick Smith Foundation.

The Foundation was formed after Nick, from Halifax, died in December 2017 just 101 days after being diagnosed with Motor Neurone Disease. He had two young children and his family have been calling for the creation of a role like this after their experience showed a lack of co-ordination and care for those diagnosed with the terminal condition.

Rachel Smith, Nick’s wife and Trustee of the Nick Smith Foundation, said:

“When Nick was diagnosed, having someone carrying out this role would have made a huge difference – someone who could co-ordinate what he needed to ensure he received the best care and what we needed as a family to ensure we had the best support. 

“I am thrilled that the Foundation in his name is able to help fund this crucial new role and make a real difference to the lives of those who have Motor Neurone Disease. Thank you to everyone who has raised money for us to allow that to happen, and to the Calderdale and Huddersfield NHS Trust for having the vision to see the impact it will have.”

The role is being co-funded by the Calderdale and Huddersfield NHS Charity – the charitable arm of the NHS here. Funds raised are used to enhance services and facilities as well as purchasing additional equipment to optimise patient care.

Emma Kovaleski, Fundraising Manager for the Calderdale and Huddersfield NHS Charity, said:

“Calderdale and Huddersfield NHS Charity exists to support and enhance patient care and the service we provide at Calderdale and Huddersfield NHS Foundation Trust, and through the generosity of our donors we are delighted to fund new services and support roles such as the MND Co-ordinator. 

“It is really important that we embrace partnerships too and thank you to the Trustees at the Nick Smith Foundation for working in partnership with us on this.”

More details about the job can be found here >>

Supporting Junior Rugby League

We’re giving £1,850 to support junior rugby league with Forty20 News as part of our commitment to encourage more young people into the sport Nick loved.

The winners of the competition which the magazine and news website have been running are now being revealed and we’re delighted that #ForSmudger supporter, the Wigan Warriors and Siddal RL star Morgan Smithies has recorded a message to announce them.

The 2.6 Challenge #ForSmudger

We’re inviting you, your family and friends to take part in The 2.6 Challenge to help support The Nick Smith Foundation.

Coronavirus has had a devastating effect on charities across the UK, with the cancellation of thousands of events and the loss of billions in fundraising income. And we’re no exception.

The 2.6 Challenge is a national effort to raise funds to ensure the work we and other organisations do can continue.

Find out more >>

Forty20 News partners with The Nick Smith Foundation to give away £1,000 to junior Rugby League teams

Forty20 News has announced a new partnership with The Nick Smith Foundation that will see four junior Rugby League teams in the UK each receive £250 to support their set-up.

The Nick Smith Foundation was founded following the death of Nick Smith, an amazing man who was struck down by the cruellest of diseases – Motor Neurone Disease.

Diagnosed in September 2017 at the age of just 37, Nick – husband, father to two young children, son, brother, grandson, uncle, godfather, colleague and friend – died just 102 days after being diagnosed on 20 December 2017 just two weeks after his 38th birthday.

Nick loved Rugby League. He played at a senior level – with Leeds Rhinos Academy and Sheffield Eagles – but mostly at a leading amateur level at Siddal ARLFC where he captained the side for several successful years and appeared over 400 times for the club.

Nick Smith Foundation chair of trustees Stephen Naylor said: “One of the aims of The Nick Smith Foundation is to support the sport, especially for young people, to try and encourage them to take up and develop their skills.

“We now run an annual tournament – the Smudger U7s – which brings together young Rugby League players from across West Yorkshire for a day of playing, coaching and fun.

“Our second event last September saw clubs from Siddal, Elland, Greetland, Emley, West Bowling, Kippax and Bramley come together for 22 games on 11 mini-pitches.

“Nick particularly loved seeing younger players coming through the ranks – and they have spoken of the impact he had on them and their careers. His legacy really does live on.

“That’s why we and the team at Forty20 News want to shine a spotlight on the amazing efforts going on across our sport to encourage, nurture and develop the next generation of players – not just the ones who make it to Super League, but the ones who enjoy playing week-in, week-out at all levels.”

Forty20 News has been a proud supporter of the work of The Nick Smith Foundation since its establishment in October 2018.

Website co-founders Tom Alderson and Tom Coates said: “We feel so privileged to be launching this amazing partnership with The Nick Smith Foundation that will see £1,000 invested into the development of junior Rugby League in the UK.

“As former junior players ourselves, we applaud the efforts of coaches and volunteers from across the country who work so hard to provide opportunities for young people.

“We’re honoured the be collaborating with the Nick Smith Foundation, who already do such fantastic work in the sport, to help give something back.”

To be in with a chance of winning, tell us what you’re doing to encourage young people to take up Rugby League, how you are developing them when they do, as well as the challenges you are facing along the way.

Four lucky winners will be selected by our panel of judges and each will receive £250 to be spent on supporting their youth set-up.

The money could be used to pay for coaching qualifications, kit or equipment – we just ask that it goes towards encouraging and supporting young people in Rugby League.

As part of the prize, your work will also be profiled on the Forty20 News website.

Email your submission to juniorgiveaway@forty20.news.

Submissions can be made on behalf of a single age group or multiple teams from the same club.

The closing date for submissions is Thursday 30 April.

 

MND Charter backed by Calderdale Council

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.

You can read the MND Charter here >>

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. 

ABOUT US

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.

MND CHARTER

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.

PRACTICAL SUPPORT

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.

IN SUMMARY

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.

Supporting children facing the death of a parent

Donations to a charity set up in memory of a 38-year old father-of-two are to be used to boost support for West Yorkshire children facing the death of a parent.

The Nick Smith Foundation is offering counselling and therapeutic play services to children from the age of three.

The charity was formed after Nick, from Lightcliffe near Halifax, died in December 2017 just 101 days after being diagnosed with Motor Neurone Disease. He had two young children, including Hadyn – now aged seven – who was supported by counselling and play therapy following his dad’s death.

The Foundation is to invest in a bank of 300 support hours for the counselling and play sessions for children across Calderdale who face the death of a parent or significant figure in their lives – whether pre-bereavement or post-bereavement.

Rachel Smith, Nick’s wife and Trustee of the Nick Smith Foundation, said: 

“When Nick died, I found it difficult knowing where to turn to get support for our children. How were they, as young children, meant to understand what was going on when the rest of us, as adults, couldn’t comprehend it.”

Stephen Naylor, Chair of the Nick Smith Foundation, said:

We hope our support, by providing these counselling and play therapy sessions, will make a real difference to the lives of young people and their families who are going through such an awful reality.”

The Calderdale Community Spirit Awards – An open letter to you from our Chair

We’re incredibly proud to have won the Calderdale Community Spirit Award for Best Marketing.

When Nick died from MND aged just 38 two years ago we were determined his legacy would live on.

For 18 months, we’ve tried to do justice to Nick’s memory, share how great he was and why we’re raising money in his name.

So to be recognised for that means a huge amount – especially in a room full of amazing organisations and inspirational individuals.

We really wish our charity didn’t have to exist, we wish Nick was still with us, but we hope he’d be proud of what we, in his name, have achieved with your support.

Thank you to Town Hall Dental for sponsoring the category, to the Community Foundation for Calderdale for organising the event and every single person who has helped #ForSmudger over the past two years.

I’m also incredibly proud that our Trustee Aimee Haggas was nominated for Volunteer of the Year. She didn’t win in the category but was highly commended for her efforts supporting the charity.

Aimee has gone above and beyond over the course of the past year to organise and run events that have made a significant difference to what we were able to achieve.

I’m really grateful for her support.

Thank you to everyone for your continued support of The Nick Smith Foundation.

 

 

 

 

Fixby and Brighouse WI support charity’s efforts to help children facing the death of a parent

Members of the Fixby and Brighouse Women’s Institute have donated £1,500 to The Nick Smith Foundation following a year of fundraising for the charity.

Every year, the WI branch choose a local organisation to support and for 2019 decided to support the Foundation, set up in memory of 38-year old Nick Smith from Lightcliffe who died from Motor Neurone Disease just 101 days after being diagnosed with the condition in 2017.

The WI’s donation will go towards the charity’s aim of helping children who have to face the death of a parent. Nick had two young children, Hadyn (7) and Georgia (4), and his wife Rachel struggled to find support, both pre-bereavement, when he was diagnosed, and when he died.

During the year, the WI have organised and supported a series of events including a fashion show at M&Co in Brighouse and the charity’s trains family fun day at Ravensprings Park in Brighouse.

Stephen Naylor, Chair of the Nick Smith Foundation, said:

“We have been overwhelmed by the support of the WI during the past few months. They are an incredible group of people who go above and beyond to raise money to support charities like ours and we can’t thank them enough.

“The donation will go directly to help young people facing the death of a parent across Brighouse and Fixby. I want to encourage anyone facing that terrible situation, or who knows of children facing it, to contact us so we can ensure they receive support at the worst possible time.”

Young people across Brighouse and Fixby facing the death of a parent will be able to benefit from the support of the WI. Anyone in the area who would like to find out more about the support on offer can email wi@nicksmithfoundation.org.uk.

Annual Report 2018/2019

Every year, as a registered charity, we have to produce and publish an Annual Report and Financial Statements to show how we ran the Foundation and how we spent the money you generously raised and donated.

This Annual Report has now been completed, the accounts prepared and independently examined and the documents submitted to the Charity Commission.

We believe the Report shows that we’re making a difference in Nick’s memory and Nick’s name, and that’s all down to you and your support for Smudger.

You can read the full Annual Report here – and we have prepared an infographic summarising what we did in year one (May 2018-April 2019) which you can see here.

Thank you for your support.