Norfolk, Norwich and Waveney Branch

 

 

News 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.

 

Santa Run

Sunday 6 December 2020 Virtual 5k Santa Run

Lisa Wilson and Jo Harmer completed the MND Virtual 5k Santa Run along Lowestoft seafront in support of the MND Association. Running in suitably festive outfits helped spread awareness of motor neurone disease!

 

Lisa is continuing to raise funds for the Association throughout 2021. She hopes to complete the Brighton Marathon, Endure 24 Reading and the Great North Run.

 

To date, through a variety of fundraising events, Lisa has raised around £4,000 since May 2019 when Steve, her late husband, was diagnosed with MND.

 

If you would like to read her story and/or donate visit https://www.justgiving.com/fundraising/greatnorthrun2020

 

A 2020 Christmas gift to support the work of the Norfolk, Norwich and Waveney Branch of the MND Association from the Trustees of the Paul Bassham Charitable Trust.

 

NCF

The Branch has been supported by Norfolk Community Foundation through Paul Bassham Community First Revenue Fund. We are very grateful to the Trustees of the Paul Bassham Charitable Trust who approved a generous donation of £5,000 to the Norfolk, Norwich and Waveney Branch of the Motor Neurone Disease Association. The money, received in November 2020, will be used to help fund our support for people living with motor neurone disease, their carers and family.

 

Malcolm Chubbock, Branch Chair said, "Local people with motor neurone disease turn to the Branch for advice and support. In addition to the emotional support provided by our volunteers we have been able to support people with financial grants to help improve their quality of life and to provide equipment that is not available through the NHS. After a very challenging year this is a very welcome boost to our funds to enable us to continue supporting people facing this devastating illness.”

 

Norfolk Community Foundation is an independent, registered charity that bridges the gap between those in need and those who can help. As part of a national movement of Community Foundations, Norfolk Community Foundation is working together with local philanthropists to make a difference to lives in Norfolk www.norfolkfoundation.com

 

Sunday 22 November 2020 Branch Open Meeting and AGM.

The Branch held its second online open meeting using Microsoft Teams on 22 November. We would like to thank Liz Cooper (Area Support Coordinator) for setting up the meeting, and everyone who attended to make it a relaxed and enjoyable meeting. Sadly we were not able to provide the usual Christmas lunch and the opportunity to buy Christmas cards and Association merchandise – hopefully we will be able to do this again in 2021.

 

Government restrictions imposed in response to COVID-19 meant that our AGM in April had to be cancelled. However, we felt that leaving all the business of 2019 to be included in the 2021 AGM would make it a rather long and cumbersome affair. We settled on a short AGM at the start of our November meeting.

 

Malcolm Chubbock, Branch Chair, began by thanking the volunteers who work tirelessly for the Branch, and Helen Copsey and Emma Larner at the Norfolk MND Care and Research Network. He paid tribute to Lindsay Goward our Regional Care Development Adviser until early 2020, and acknowledged the thanks owed to Helen Devlin who was our branch secretary until stepping down in June 2020.

 

Malcolm provided a short financial report for 2019.

 

The total income in 2019 was £51,403. This consisted of £8,718 in general donations; £6,360 donations in memoriam; general fundraising activities raised £31,736 and other income from bank interest and gift aid totalled £3,882.

 

Our total expenditure was £51,069. This consisted of Care expenditure of £14,908. Branch administration, which includes meeting costs, printing, postage and stationery totalling £3,572. Transfers to National Office amounted to £32,404, which included our annual transfer and £10,000 to the Chief Executive Annual Appeal – the annual transfer helps provide the support services that local people benefit from. People living with MND in our branch area received £3,000 towards the cost of equipment and services from My Name’5 Doddie Foundation.

 

Malcolm listed the major income events for 2019 as follows.

1) Nigel and Mandy Allen fundraising activities £9,498

2) Steve and Belinda Rowe, Bungay golf club Captains charity of the year £7,481

3) Historic gift aid £3,429

4) Sainsbury’s carrier bag scheme £1,254

5) Make it count Paul Wharton concert £1,167

6) Broadbeat Choir £1,135

7) Wayland Lodge £1,056

8) Swanton Abbott Chapel concert £1,023

 

We are grateful for all amounts – large and small – raised in aid of the branch, and would like to record our thanks to everyone who supported us so generously throughout the year.

 

Kerrie Campbell, Community Engagement Manager with Carers Matter Norfolk gave us a very interesting and informative talk, for which we were very grateful. Below is a video of her talk  - and you can also see her powerpoint slides.

 

 

Carers Matter Norfolk provide a personalised support service supporting unpaid carers in Norfolk, their contract is funded by Norfolk County Council. All carers are entitled to a Carer’s Assessment, an opportunity to discuss what support or services they need and to look at how their caring role may impact on their life. Kerrie highlighted the fact that a Carer’s Assessment has nothing to do with judging how well carers look after the cared-for person, it is the opportunity to look at the things they want to achieve.

 

Carers Matter Norfolk provide a free advice line offering independent, confidential support, information advice and sign posting. The Carer Advisors have been trained to provide listening and emotional support; many have caring experience. By talking with an advisor they can conduct a low level carer’s assessment for you, and together you can agree on whether it would be helpful to have a full carer’s assessment.

 

Free from landlines and mobiles you can call the Advice Line on 0800 083 1148. Open Monday to Friday: 9am – 8pm; Saturday & Sunday: 10am -2pm.

 

Carers Matter Norfolk also provide information sessions, and a Carers Self-help Hub with online learning.

 

In partnership with Voluntary Norfolk, Carers Matter Norfolk has access to a Health and Wellbeing Fund. They also provide Carer’s Breaks. To make an enquiry about access to the fund or a break you need to go contact the advice line – these services are not means tested, however there are eligibility criteria which need to be met should you wish to access them.

 

Sue Heal gave an update on campaigning. She spoke about a meeting that she and Jane Lewis had with Duncan Baker, MP for North Norfolk, on 28 September. Mr Baker has been very active behind the scenes supporting the Scrap6Months campaign run jointly by the MND Association and Marie Curie. Two days later Sue and Malcolm Chubbock met with Jerome Mayhew, MP for Broadland. They discussed the Scrap6Months campaign and the Act to Adapt Report. The report looks at access to home adaptations for people with motor neurone disease. Mr Mayhew agreed to write to Thérèse Coffey on our behalf in support of speeding up the publication of the review of the Special Rules for Terminal Illness used in accessing benefits. Sue and Jane looked forward to meeting with James Wild, MP for North West Norfolk on 30 November. She expressed our appreciation of Mr Wild's ongoing support for our Scrap6Months campaign, which features on his website.

 

Sue was pleased to report that of the ten MPs representing Norfolk, four accepted an invitation to attend the All-Party Parliamentary Group on MND meeting on 18 November. Peter Aldous, Duncan Baker, Jerome Mayhew and James Wild were amongst the 31 MPs and Peers who attended. Clive Lewis sent his apologies, but continues to pay close attention to our work. You can find more information about the meeting here. If you would like to see the minutes of the meeting they can be found here.

Sue thanked everyone who has completed the e-action as part of our Act to Adapt campaign that launched in September 2020. The e-action allows you to contact your local councillor with a copy of the Act to Adapt report.

Finally, Sue and Helen Copsey, MND Coordinator, met with Nicholas Pryke, Operations Director – Norwich Adult Social Care and Norfolk Community Health & Care NHS Trust. It had provided a useful opportunity to catch up on what has been achieved since Norfolk County Council voted to give its unanimous support to the MND Charter in January 2017. We now have four MND Champions in Norfolk, professionals who have an in-depth knowledge of the disease, working as Occupational Therapists and Social Workers. There are plans to expand the number of MND Champions, and further improve communications between staff at Norfolk County Council and the MND Network to share training opportunities. We look forward to continuing our work together.

 

Thursday 15 October Recruitment and Opportunities Virtual Fair hosted online by the University of East Anglia

This was a new experience for us all. Liz Cooper, our Area Support Coordinator, Sue and Jane were very grateful to Michelle Frost, Volunteering Media Coordinator, who helped and supported us behind the scenes to set up our online booth. We would also like to express our thanks to the staff at the University who were organising the fair; it was a first for them too! They ran a number of training sessions ahead of the day and answered our many questions. The fair provided us with a wonderful opportunity to meet new people with a view to spreading awareness of the work of the MND Association and the range of roles available to volunteers in Norfolk.

 

Hosted online, students and alumni from the university were able to enter a virtual hall filled with volunteering and employment stands, and were able to chat with Liz Cooper, our Area Support Coordinator and volunteers. Whilst there was a group chat on the booth there was also the facility to move into a private ‘room’ for a video chat. Sue and Judy represented the Norfolk, Norwich and Waveney Branch, and Jane the West Norfolk & King’s Lynn Group.

 

Whilst it was a strange experience ‘approaching’ those that were viewing the stand virtually, over 20 students inquired about volunteering roles available, including Association Visitors, Care Service Navigators, Fundraisers, and roles aimed at skills that may be found within the degrees available at UEA - including film making/video editing, media relations and social media.

 

In the weeks that followed Liz, Sue and Jane had the enjoyable task of meeting a number of students and graduates online to discuss the roles they were interested in. We are delighted that a number were happy to confirm their willingness to volunteer with us, and are currently taking part in the online induction and training offered by the MND Association. We are grateful to them for their enthusiasm and the expertise they will bring. We are also delighted that the University is continuing to support us by allowing us to use their free advertising site to feature other volunteering opportunities.

 

We look forward to our new volunteers introducing themselves over the coming months, alongside those who have joined us recently after applying through the Association’s 'Volunteer with us' page. If you are interested in volunteering with us we would love to hear from you - especially if you are interested in providing secretarial support to the Branch we really need your help!

Recruitment
Recruitment

 

 

Beautiful handmade quilt for sale - a wonderful Christmas present?

The Branch has been offered this splendid double quilt for sale to raise funds for the Branch. After some research and discussion with the donor it has been agreed to price it at £150. If you are interested in purchasing the quilt please contact sueheal@btinternet.com

 

Quilt

 

 

Sunday 13 September – Sunday 18 October Mission 5000.

Mission 5000

Mission 5000 was 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. She began with a target to raise £1,000 in support of the work of the Norfolk, Norwich and Waveney Branch.

 

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. By the end the challenge she had walked 112.82 miles and raised £1,040. As of 3 December 2020, the total stands at £1,140 and includes a generous Christmas donation. https://www.justgiving.com/fundraising/susan-heal

 

With over 800 participants the distance covered was 57,897 miles, and raised over £230k for the Association. It was an incredible way to raise awareness of MND and the support that is available for people living with MND locally.

Mission 5000

 

Sue said, "It felt wonderful to be part of a community and to read other people’s inspiring stories on social media. I hope that in due course we might meet some of the wonderful volunteers living in our Branch area who did so much to raise funds for the Association, and in doing so raise awareness of this cruel disease.”

 

If you took part in Mission 5000 and would like to share your story on the Branch website please email sueheal@btinternet.com.

 

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.