Norfolk, Norwich and Waveney Branch

 

 

News 2020

Fightback

June 2020

February 2020

 

 

 

FIGHTBACK

The branch publishes Fightback, our newsletter, three times a year. Its contents include reports of recent events, notice of future events in aid of the MND Association, a thank those who have raised or contributed funds for the work of the branch and news from National Office.

 

Sunday 13 September – Sunday 18 October Mission 5000.

Mission 5000

Mission 5000 is a brand new virtual fundraiser. Along with MND Association national office, branches and groups across the country the whole MND community was invited to cover 5000 miles.

 

That represents a mile for every person living with MND in the UK. Participants were able to choose whether to run, cycle, swim or scoot to cover their pledged miles on one day, week or over the whole five week period – fortunately it was not a race!

 

Sue Heal

Sue Heal signed up to Mission 5000 with a pledge to walk 75 miles, one for every person living with MND in our branch area – and a little extra. You can help her achieve her target to raise £1,000 in support of the work of the Norfolk, Norwich and Waveney Branch by visiting https://www.justgiving.com/fundraising/susan-heal.

 

Sue's first walk accompanied by a good a friend took her to Wymondham Halt, along the River Tiffey to Kimberley and back to Wymondham along the Deep Lane, a distance of 7.48 miles. What she did not take into account was the number of stiles involved, which slowed them both down! As you can see in the photo – they had good weather for a walk.

 

The next day Sue walked 3.13 miles alone, and slowly the miles accumulated and by the end of the first week she had covered 23.92 miles and her total stood at £415 with more pledged offline. Week 2 got off to a good start with 7.66 miles walked on Sunday 20 September, and by Monday 21 September the online total stood at £465, with a further £100 collected offline.

 

Sunday 19 July 2020 Branch Open Meeting.

The Branch held its first online open meeting using Microsoft Teams – it was also the first 'virtual support' meeting in East Anglia! Our thanks to Liz Cooper (Area Support Coordinator) for setting up the meeting, and to everyone who took part.

 

It was quite a small meeting, which gave time for everyone to introduce themselves, listen and comment on the various presentations. Mercifully there were few technical glitches – perhaps the biggest was that none of us could find the chat function that some of us remembered using on previous occasions. We will use this platform again if a face to face meeting is not possible later in the year – but, will investigate the chat function ahead of time!

 

The presentation by Helen Pye, Specialist OT from Environmental Control Service Norfolk was very helpful and informative. Helen was able to share her screen with us so that everyone could view the power point presentation. If you were unable to join on the day we hope that you will find the attached copy of Helen's presentation useful. There was an opportunity to ask questions afterwards.

 

Helen Copsey gave a wonderful update on the developments of the Norfolk MND Care and Research Network. It is amazing what has been achieved since it was established in June 2017 supported by the MND Association. The Network has worked to improve the way that the various health professionals work together, and established formal regular meetings to bring people together.

 

The network operates from the Norfolk and Norwich University Hospital, but also has dedicated MND clinics at Cromer Hospital, Beccles Hospital, Queen Elizabeth Hospital, King's Lynn and at nearby Tapping House. There is close collaboration with the neurology team at the James Paget Hospital at Gorleston-on-Sea. The aim is to make clinics as accessible as possible to people living with MND across Norfolk.

 

In November 2018, Emma Larner joined the Network team as the Respiratory Physiotherapist. Emma has made a huge difference in supporting people with MND, with much of her work being undertaken in people’s homes. The team are currently working towards establishing Emma’s post as permanent within the service.

 

Covid-19 has meant that a number of consultations needed to be carried out online or by telephone, but face to face appointments have restarted where these are felt to be more appropriate. However, the experience of using alternative methods of communication has been successful and will be retained in the future where they are felt to be appropriate and helpful to people living with MND and clinicians.

 

A key aim of the Network is to improve the opportunities for people with MND to participate in research if they wish to do so. Unfortunately Covid-19 has resulted in most of the research activity being paused, including its collaborative work with the UEA which focuses on areas such as behaviour and cognition. The Network continues to recruit to the MND register which will provide an invaluable national database for use in both delivering care and recruiting to future research. Prior to the pandemic, the Network had also expressed an interest to be established as a site for the MND-SMART study and is keen to pursue this as soon as possible. The Network will be sure to update patients and families as research starts to resume again.

 

Malcolm Chubbock gave an update on the work of the Branch, which has responded to the Covid-19 pandemic by following guidance from the Association to avoid face-to-face contact with people living with MND unless absolutely necessary – instead everyone has received regular phone calls where they have given permission to be contacted.

 

Sue Heal gave a brief update on campaigning referencing the following campaigns. Rest assured work is always going on behind the scenes to better support people living with motor neurone disease.

  • The move to get people with MND on the extremely vulnerable list, which began when Sally Light sent a letter to Matt Hancock, Secretary of State for Health and Social Care, on 25 March. This was followed by tweets then emails to MPs and a selfie campaign from Campaign Contacts, including Sue, and supporters around the country. There was considerable media coverage – including an article in the EDP on April 15. George Freeman MP, representing the Norfolk MPs, wrote to Helen Whately MP on our behalf and received a reply on 19 June. Although the government didn't change its advice, the Association continued to encourage anyone living with MND to self-register and to get access to the support they need during the Covid-19 pandemic.
  • An action was launched during Carers Week to highlight the issues faced by unpaid carers. Sally Light wrote a letter calling on the government to take urgent action to relieve the pressures that unpaid carers face. Measures suggested to provide better support included improved access to testing and PPE, an increase in Carers Allowance and clear guidance that helps protect unpaid carers and those they care for as lockdown restrictions begin to be lifted. The EDP published Sue's letter on 11 June, the same day as Sally Light's letter was delivered virtually to Helen Whately – it was signed by 3081 supporters.
  • Scrap 6 Months – the #Scrap6Months campaign calls for everyone with a terminal illness, such as MND, to be able to access benefits using the Special Rules for Terminal Illness (SRTI), a process meaning people do not have to fill in a long form, attend a face-to-face assessment or wait weeks for their benefits to arrive. The campaign was launched on Global MND Awareness day 21 June 2018, on 11 July 2019 a review of the SRTI was announced following a reception held in Westminster on 3 July to enlist the support of MPs. We are calling on the government to change the law to move away from the 6 months definition towards a decision made by a clinician, and to remove the three year cap on the award and replace it with a life time award. Sue suggested that people watch MP Jessica Morden launch her 10-minute rule bill, Welfare (Terminal Illness) on Wednesday 23 July, which seeks to do just that.
  • Act to Adapt – a campaign to ensure that people with MND get the home adaptations they need quickly and easily to ensure they can live safely and independently. Sue made a plea for people to have their say and share their stories – and mentioned Martin's story, which appears in the Act to Adapt Report.

Since the meeting a lot has happened – if you want to read more about our campaigns you can follow this link.

 

As always we invite anyone who attended to provide feedback – you can use the Contact us page or email Malcolm directly.

 

Sunday 21 June 2020 Global MND Awareness Day

Lisa Wilson began the day at Ness Point at 4:30am with her son and an MND Association banner to capture the sunrise on Global MND Awareness Day. Ness Point, also known as Lowestoft Ness, is the most easterly point in the British Isles.

 

It was much later in the day when Malcolm Chubbock, Anne Gillett and Sue Heal met in Norwich to take photos in front of Norwich City Hall shortly after 10pm. As has become customary Norwich City Hall was illuminated in blue and orange, the colours of the Motor Neurone Disease Association.

 

 

We are grateful to the Culture & Events Officer at Norwich City Council who has added the date to his diary to ensure that the light up is a recurring event.

 

Sue wrote to all of the Norfolk MPs, and some of the councillors around the county who have been involved in adopting the MND Charter, and invited them to mark the day by posting on Twitter. We are grateful to those who did or who sent emails in support of our work.

Ladies Day

 

Thursday 18 June 2020 Ascot Ladies Day

Christine Wells organised an Ascot Ladies Day for a small group of friends. They had great fun with lunch, champagne, quizzes, best hat competition and sweepstake on three races. Together they raised £131.50 for the Branch for which we are very grateful.

 

Euphonia Project - Can You Help?

We need your help – read on to find out why and how!

 

It may sometime in the future help people with MND who have slurred speech to be better understood by voice recognition systems. This is why the MND Association are supporting Euphonia and sharing the ways that you can get involved.

Full details here

 

Wednesday 19 February 2020 Notcutts Coffee Morning

Numbers attending our coffee mornings at Notcutts are very variable; everyone is welcome. On 19 February, there was a wonderful mix of people attending for the first time and those who come regularly. We were delighted when our numbers were boosted by the arrival of members of the BroadBeat Choir. It seemed like a good day to take some photos, a selection are shown below.

 

Each year the BroadBeat Choir support a different local charity by receiving donations for whole choir performances. Individual members also raise money through sponsorship and holding coffee mornings. Throughout 2019, the BroadBeat Choir raised money to support the work of the Norfolk, Norwich and Waveney Branch. Their founder and Musical Director, Sandra Edwards, presented us with a 'bag of cash' containing £158.32, at the coffee morning. This brought the total raised throughout the year to £1,675.92. That is a seriously impressive result for which we are extremely grateful!

 

The members of the Choir give their time freely and take no expenses, some weeks performing as many as three times. Rehearsals take place in Norwich, Wroxham, Neatished, Blofield and Brundell. If you want to read more about the Choir you can visit their website and, if you want to sing, they say new members are welcome to join at any time.

 

Our next coffee morning at Notcutts is on Wednesday 18 March – if you are affected by MND or know someone who is, and would like to come and talk, we would love to see you.

 

Thursday 13 February - Marsh Christmas Charity Car Park cheque presentation

Car Park Cheque

Thank you to everyone who used Marsh’s car park in Norwich during the weekends between 23 November and 22 December 2019 and donated a minimum of £4 to park all day. Many people very generously asked us to keep the change having given us a £5 or £10 note.

 

We would like to thank all the staff (over one hundred) who volunteered their time to act as marshals, and who made the Branch members who were able to help very welcome. Of course we would also like to thank our volunteers too! Special thanks go to Stuart Palmer who cooked bacon butties for the volunteers on his shift!

 

In the last thirty years Marsh and staff who volunteer have raised over £350,000 for charitable causes – an amazing sum.

 

Malcolm and Judy, pictured here with Stuart, were able to attend the cheque presentation on Thursday 13 February 2020.