Norfolk, Norwich and Waveney Branch





Get people with MND on the extremely vulnerable list.

The Association is calling on the government to include those living with MND in their group of people who are extremely vulnerable people to shield from Covid-19. Those on the list have been granted certain protective measures such as priority access to supermarket deliveries. To find out more about the campaign, and to read about what the Association is doing in the light of the government’s response, click here.


Thank you to everyone who contributed to the #GetMNDonTheList campaign. Since the campaign began in late March there has been considerable media coverage of the issue, over 5,200 supporters, over 120 MPs, nearly 40 clinicians and several high-profile celebrities have joined together to #GetMNDonTheList.


It is with great disappointment that we report that the Government has not changed its position and will not be adding MND to the list of conditions clinically extremely vulnerable to Covid-19. The Government's position is that inclusion on the list should be limited to people with MND who have developed respiratory or bulbar symptoms. In correspondence with the Department of Health and Social Care (DHSC), Deputy Chief Medical Officer Dr Jenny Harries has said that 'patients with MND should continue to be recommended by GPs/specialists for shielding on a case by case basis, to reflect the varying degrees of severity of Motor Neurone Disease.'


The advice from the Association remains to encourage anyone living with MND to self register.


Watch Sally Light, Chief Executive, talk about the campaign:



As you will see from what follows, there was little else we could have done to encourage the government to change its position.


Sally Light, Chief Executive, wrote to the Secretary of State for Health and Social Care Matt Hancock on 25 March. In her letter she expressed concern that people with MND had not been included in the Government's list of extremely vulnerable persons in their guidance on shielding and protecting vulnerable persons from Covid-19.


On 26 March, a number of local campaigns contacts tweeted Matt Hancock MP to ask for help. Locally George Freeman MP agreed to take this up on behalf of the Norfolk MPs.


On 27 March, it was confirmed by DHSC that people with MND could self register as extremely vulnerable. It was suggested that they tick 'yes' I have one of the medical conditions on the list, and in this instance MND would be classed as a severe respiratory condition.


On 30 March, campaigns contacts and other supporters joined an e-action, emailing their MPs to seek their support to get MND on the list. All ten Norfolk MPs were contacted, and people shared a number of supportive responses from their MPs. Thank you to everyone who contacted their MP.


However, the concern remained that people with MND were still missing out because MND was not explicitly mentioned on the list.


Sue Heal, Branch campaigns contact, submitted a draft article to the EDP on 6 April, which was taken up by reporter Simon Parkin and published online here. The article appeared as a full page article in the print edition on April 15, 2020.


Local papers around the country ran similar stories, but to quote Susie Rabin, the head of policy and campaigns for the MND Association, speaking to The Guardian on 20 April, “We're hearing from people that their GP won't put them on the list after they tried to self-register as MND isn't listed”.


On 22 April, the campaigns team launched a 'selfie' campaign with the hashtag #GetMNDonThe List to raise awareness of the need to get MND on the list. Click here to get involved and to see the action so far. In the video below, produced by Bryony Smith, Sue outlines the importance of the campaign - warning, it contains statistics that some might find distressing, its intended audience is the Department of Health and Social Care.




This campaign and others continue. To read more or keep up to date follow the MND Campaigns Twitter feed.



Wednesday 20 November 2019: North Norfolk District Council adopts the MND Charter

On 22 March, Sue Heal met with Cllr. Sarah Butikofer to discuss the MND Charter; Cllr. Butikofer expressed her support, but was unable to take the matter further as local elections were pending. In July, Sue met Cllr. Virginia Gay and asked about the possibility of turning support into adoption. It was with great pleasure that we learnt Cllr. Gay had announced, in her September cabinet member's report, her intention to bring forward the MND Charter at the next full council meeting.

NNDC Charter
Pictured from left to right: Cllr Andrew Brown, Cllr Virginia Gay, Ann Cleall, Trish Moore, Cllr Dr Clive Stockton, Council Chairman


On 20 November, Cllr. Gay brought forward a motion seconded by Cllr Emma Spagnola; as Cllr Spagnola was unwell on the day Cllr. Andrew Brown kindly stood in at the last moment.


The agenda item read:


'We propose that this Council adopt the Charter of the Motor Neurone Disease Association (attached)


North Norfolk District Council has been requested to give its formal support to those who suffer from Motor Neurone Disease by adopting the Charter of the Association. The Charter is simply a statement of the care, support and consideration which those who suffer from Motor Neurone Disease and those who care for them should be entitled to expect. There is no cure for motor neurone disease.


We hope that all members will join us in adopting the Charter.'


Care Service Navigator Trish Moore attended the Council meeting and gave a short speech to the full council. Cllr. Gay said that people were very touched by Trish’s speech, it was important in bringing the case home to councillors. She said, ‘it made all the difference’. The vote in support of the motion was passed unanimously.


We thank North Norfolk District Council for their support and look forward to working with them and to developing a close relationship that provides the best possible support for people living with MND and their families.


General Election Campaign 2019

The MND Association launched its general election campaign on Monday 18 November. The campaign will run until election day, 12 December 2019. The focus is on Scrap 6 Months. You can read more about the campaign here. You can also read our full manifesto.


We are calling on parliamentary candidates to pledge to Scrap 6 Months. They will be able to do this in the following way:

  • Complete an online pledge form
  • Print a paper pledge card and tweet a picture showing voters their support

We would like to encourage you, our supporters, to get in touch with your local candidates asking them to take the pledge. The easiest way to do this is to visit here and follow the actions for supporters. They include Tweeting and/or emailing your candidates, and talking with your candidates if they knock at the door or you attend a local hustings event.


We have joined up with Marie Curie on this campaign who will be hosting the Scrap 6 Months pledge for candidates on their website too.


The overarching message is to use the general election to raise awareness of MND as much as possible, but to remain impartial. The full guidance can be found here.


Please share any messages of support with us on our social media channels.


Act to Adapt – New Report

Act to Adapt

Take a look at our new report on access to housing adaptations for people with MND here which launched on 26 September 2019. Act to Adapt highlights the challenges that people with MND face when it comes to living independently and safely in their own homes.


There is also a shorter summary available to read here.


Thank you to all who contributed to the development of this report.


We look forward to developing campaigning actions to encourage decision makers to deliver on our Act to Adapt report recommendations. In the meantime the report makes for interesting reading. It provides strong case studies describing councils that have developed good practise that we hope to see spread more widely.


Wednesday 7 August 2019 Petition handed in to 10 Downing Street

Hundreds of people from across Norfolk added their signature to the Scrap6Months petition handed in to 10 Downing Street. We were among 55,435 signatories from England, Wales and Northern Ireland calling for the Government to change the law to enable more terminally ill people to get quicker and easier access to the benefits they are entitled to. Thank you to everyone who signed.

Petition August 2019
From left to right: MND Association trustee Dr Nik Sharma, Marie Curie campaigner Mark Hughes, Downton Abbey actor Jim Carter, MND Association campaigners David and Helen Setters and Marie Curie nurse Liz Hayles handing in the Scrap6Months petition to 10 Downing Street.


Representatives from the two charities, including Marie Curie ambassador, actor Jim Carter who plays Mr Carson in Downton Abbey, carried the petition to the famous black door. It was accompanied by a letter to Prime Minister Boris Johnson asking him to consider the enclosed petition to change the law governing eligibility for the fast-track application process for welfare benefits for the terminally ill.


The driving force behind the campaign is our belief that people living with terminal illness such as MND should be able to claim benefits without having to fill in a long form, attend a face-to-face assessment, or wait weeks for their benefits to arrive. We would like to see the Government change the law, as Scotland already has, to move away from the 6 months definition towards a decision made by a clinician.


Thanks to your support the Department for Work Pensions has already announced a review of the benefits system for the terminally ill, as a result of the #Scrap6Months campaign (see below). A positive move in the right direction, we will continue to push to ensure the review takes place quickly, and creates a better system for those living with MND.


As soon as we receive a response from Prime Minister Boris Johnson we will post an update.


You can read more about the day HERE


Wednesday 3 July Campaigners travel to Parliament to meet MPs.

A parliamentary drop-in event hosted jointly by the MND Association, Marie Curie and the All-party Parliamentary Group on Terminal Illness attracted 62 MPs and Peers to meet people with MND, Association volunteers and health and social care professionals. Jeremy Vine, Association patron, also attended the event. Over 50 volunteers attended to speak with MPs about the Scrap6Months campaign and to discuss fast track benefits for people with MND. Thank you to everyone who invited their MP to attend.


Drew Hendry MP, Chair of the APPG on Terminal Illness, launched the event and their new report which found that the current benefits system for dying people is ‘not fit for purpose’. Madeleine Moon MP gave a very moving address in which she spoke of her own experience of loosing first her mother-in-law and later her husband to MND. She explained how she came to present the ten-minute rule bill, Access to Welfare (Terminal Illness Definition) Bill 2017-19. The bill seeks to replace the current definition with a clinical judgment by an appropriate health professional who knows the individual.


Martin Burnell, who is living with MND, and his mother Edie attended and spoke with his MP, Peter Aldous. Dianne Hepburn from the King’s Lynn Support Group also attended representing the West Norfolk. Sue Heal had emailed invitations to the MPs who cover our Branch area, and attended in her role as Branch Campaigns Contact. She was able to talk with Peter Aldous MP for Waveney and Brandon Lewis MP for Great Yarmouth. Both offered their support for our campaign. Clive Lewis MP for Norwich South and Norman Lamb MP for North Norfolk had both indicated that they hoped to attend. Due to the rapidly changing nature of parliamentary business all confirmed meetings carry a risk of cancellation - and so it proved on the day.


You can read more on our National website.


The event was reported in the EDP.


Since then Sue met with Clive Lewis, on 11 July, in his constituency office to discuss the campaign. Discussions also included the problems caused by the change to the way in which people are charged for social care in Norfolk, and the work of the Norfolk MND Care and Research Network. Clive Lewis has a special interest in health; it was agreed that at some point we will arrange for him to meet Helen Copsey and other members of the network.

Sue has also been offered, and accepted, an appointment to meet with the Rt Hon Norman Lamb in his constituency office on 23 August.


DWP to review benefit rules for terminally ill people

On 11 July, Work and Pensions Secretary Amber Rudd announced a review of how the benefits system supports people living with severe progressive conditions and people nearing the end of life. The Association Campaigns and Policy Team attended a roundtable meeting on the day of the announcement to engage with this work. Although this is a step in the right direction the campaign is not over yet.


It is crucial that we continue to keep the pressure on and demonstrate to the Government that there is strong support within the MND and other terminal illnesses community for a change in the law. On 12 December 2018, the campaigns team launched a petition calling on the Government to change the law defining a terminal illness. It asked for a removal of the reference to a reasonable expectation of death within six-months when using the Special Rules for Terminal Illness fast track process to apply for benefits.


Thank you to everyone who signed the petition which closed at the end of July with close to 35,000 signatures. It will be presented to the Prime Minister in early August.


Our Scrap6Months campaign was launched just over a year ago, calling for everyone with a terminal illness, such as MND to be able to access benefits using the Special Rules for Terminal Illness. Currently only those with a life expectancy of six months or less can access this fast track process - though the notes for those completing the DS1500 explain that this can be interpreted to mean that it would not be surprising if death occurred within six-months. You can read more on our National website here.


The Disability Benefits Consortium and MND Association launch a report about the impact of benefit changes.

On July 16, the MND Association was in Parliament for the launch of a new report by the Disability Benefits Consortium, of which the Association is a member. The report makes a number of recommendations including on the application process and assessments for benefits for disabled people. The report shows that changes to the benefit system over the past 10 years have increased the poverty levels of disabled people. Many people have had a reduction in benefits, but disabled people are four times worse off than non-disabled people. You can read more here.


Scrap 6 months campaign update:

A lot has happened since the Campaigns team launched the Scrap 6 Months campaign in June 2018. As many of you will know the campaign aims to ensure ALL people with MND can claim benefits using the fast track process, also known as the Special Rules for Terminal Illness (SRTI). The SRTI application route is available for Employment and Support Allowance, Personal Independence Payment, Attendance Allowance and Universal Credit.

Scrap 6 months


Under the Special Rules for Terminal Illness (SRTI) people’s application for disability benefits can be fast-tracked if their GP, consultant or specialist nurse completes a form (DS1500) confirming there is a ‘reasonable expectation of death within six months’. Motor neurone disease is a complex condition and it is almost impossible to give such a precise life expectancy, if strictly interpreted this would exclude many people living with MND – hence the need to Scrap6months. The SRTI process allows claimants to be awarded benefits quickly without the need to fill in a long form, attend a face-to-face assessment or have an inappropriate conversation with a work coach.


In July 2018, Madeleine Moon MP, the chair of the All-Party Parliamentary Group on MND, presented her Access to Welfare (Terminal Illness Definition) Bill 2017-19. The Bill seeks to replace the current definition with a clinical judgment by an appropriate health professional.


A parliamentary drop-in event was arranged for 13 November to raise awareness of the bill and to gather government support ahead of the Second Reading of the Bill scheduled for 23 November. Fifty-two MPs attended and, although Peter Aldous was the only MP from our region to attend, a number of local MPs have expressed interest in the campaign and have have asked Sue Heal, as Campaigns Contact, to keep them updated on the progress of the bill.


Thank you to everyone who emailed their MP asking them to sign the letter or sent a postcard inviting them to the drop-in event, your actions demonstrate local support for the campaign.


Sue Heal wrote to MPs before the second reading to share the results of an independent poll of 1,001 GPs across the UK in October 2018. It was commissioned by the Association and conducted by medeConnect. It demonstrates support within the medical community for a change to the definition of a terminal illness for the purpose of accessing benefits.


The polling found that:

  • 51% of GPs supported a change of definition of a terminal illness for claiming benefits under the Special Rules for Terminal Illness, with only 12% disagreeing with the change.
  • 12% of GPs were not aware that a DS1500 form (for confirming a terminal illness) could be used for conditions other than cancer
  • Only 5% of GPs said that it is always clear when to sign a DS1500 form for their patients; the figure was 7% for consultants

In addition, a group of 30 neurologists was consulted for their views on the proposed change, and 71% expressed support for a change to the current definition of a terminal illness.


This information was also sent to the EDP embedded within a draft press release. We are grateful to Geraldine Scott for taking the time to talk with Martin Burnell (who is living with MND) and writing a detailed article raising many of the key issues surrounding the campaign. We were delighted that she was also able to obtain a very positive quote from a Department of Work and Pensions spokesman. The article also appeared in the Daily Mirror giving welcome national exposure to the campaign:


Sadly on 23 November, the second reading of the Bill was rescheduled for 25 January 2019. Whilst this was disappointing, it was not unexpected as many debates had been scheduled for the same day. Wishing to maintain the momentum of the campaign the Association sent a letter to the new Secretary of State at the Department for Work and Pensions, Amber Rudd, urging the Government to look urgently at the issue of a change in the law so that everyone with a terminal illness can access welfare benefits quickly, and sensitively.


The House of Commons Work and Pensions Select Committee published a report on Universal Credit in December 2018, which recommended that the Government adopt the change proposed by Madeleine Moon's Bill. The report states: 'We recommend the Department adopt the approach taken in the Social Security Act (Scotland 2018 in determining who can use the SRTI. This would permit claimants to use the SRTI if: “It is the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual's death”.'(page 28) The MND Association's evidence was widely quoted on pages 27 to 29 of the report. The full report can be accessed at


Tuesday 24 July: Breckland District Council became the 76th Council to adopt the MND Charter

Breckland District Council
From left to right, Sue Heal, Cllr Paul Claussen and Cllr Bill Borrett


Norfolk, Norwich and Waveney Branch Campaigns Contact Sue Heal attended the Cabinet Meeting on 24 July, 2018. The motion "To consider whether the Council wishes to show its support by signing the Motor Neurone Disease (MND) Charter” was introduced by Cllr Paul Claussen, Health lead for Breckland, who invited Sue to speak about motor neurone disease and the importance of councillors and council staff understanding the challenges faced by people living with MND. The recommendation was “That the Council demonstrates its support for local people affected by Motor Neurone Disease by signing the MND Charter”. We are very grateful to Steve James, Communities & Environmental Services Manager who has worked behind the scenes to prepare a report for the Council and to steer it onto the Agenda for the meeting.


We are also grateful to Steve James and Gordon Bambridge, Portfolio Holder for Housing for meeting with Lindsay Goward, Regional Care Development Adviser, and Sue to discuss housing issues earlier in the year, and for the work they are doing to improve the experience of people in Breckland applying for Disabled Facilities Grants.

Their thoughts were fed into the fact finding exercise being held by the Campaigns Team looking at Accessible Housing.


The photo shows Sue with Cllr Paul Claussen and Cllr Bill Borrett, Chair of the Norfolk County Council Health and Wellbeing Board and Breckland District Councillor.


Housing Survey:

The consultation period ran from March to July 2018 and aimed to understand the difficulties people have when they are trying to access appropriate housing. The survey reached around 850 people, including people with MND, their carers and families, Association volunteers and staff, health and social care professionals and housing professionals. Thank you to everyone who took part and shared their views. These will help shape Association policy and future campaigning to push for improvements so that people with MND can access the homes or adaptations they need, when they need them.


The results of the survey showed that the biggest challenges associated with housing adaptations and accessible homes for people with MND are:

  • Time taken to access services
  • Cost of adaptations/moving to an accessible home (96% of people living with and affected by MND mentioned this in the survey)
  • Lack of availability of accessible homes (83% of professionals mentioned this)
  • Emotional burden of adapting their home or moving to an accessible home
Some of the solutions suggested to overcome the challenges are:
  • Better support, services, financial help and information for people with MND and their families
  • Shorter waiting times to access services
  • Greater availability of accessible homes

Following the adoption of the MND Charter by local councils, Lindsay Goward and Sue Heal have begun engaging in discussions with members of some of the housing departments. If you have difficulties in obtaining assessments for Disabled Facilities Grants, the speed with which the work is scheduled to happen or in moving into an accessible home please let us know.


Campaign success!

On 18 June 2018, the Department for Work and Pensions (DWP) announced that people with the most severe health conditions, such as motor neurone disease, who get the highest rates of Personal Independence Payments (PIP), will not have to attend regular reassessments.


However, reassessments remain for people in receipt of ESA before 29 September 2017. If you are affected please contact MND Connect on 0808 802 6262 or email where someone will take your details and put you on a contact list for further information. Work is ongoing in the hopes that the ESA exemptions are extended. If you are part of this group and are sent an ESA50 form for reassessment, you can contact the Association's Benefits Advice Service on 0808 801 0620 for help completing it.


The Big Social Care Survey Results are published

The Care and Support Alliance, of which the MND Association is a member, requested your help to gather information to inform our campaigning for a properly funded care system. Thank you to everyone who took part in the survey, enabling us to share the experiences of people and their families who have needed adult social care and support. The key insights are taken from the main MND Association website.


Key insights from people living with MND

  • The support offered by social care for people with MND is perceived as consistently worse than health care. For those that answered the question “overall I am satisfied with the care I receive” only 63% felt this for Social Care vs 86% for Health Care.
  • A wide range of Social Care problems were identified in the survey. For example, only 45% of people know how to access an advocate.
  • There is a lack of awareness of voice banking. Based on the responses, 40% of those people who had not banked their voice were not aware they could do this.

Key insights from carers

  • Carers for people with MND spend a very high proportion of their time caring. More than half of carers (59%) spend more than 50 hours per week caring. That’s more than an average week’s full time job.
  • Many carers are not getting carer’s assessments. Only 38% have been assessed or are in the process of being assessed.
    Nearly half of carers receive no benefits at all.

Monday 11 December: South Norfolk District Council adopt the MND Charter

South Norfolk District Council


South Norfolk Council became the 60th council to adopt the MND Charter, and pledge to help influence positively the lives of people living with MND in their community.


Norfolk, Norwich & Waveney branch members Malcolm Chubbock and Sue Heal attended the council meeting, where South Norfolk Council voted unanimously to adopt the MND Charter, giving a great message of support for people affected by the disease.


We are delighted that South Norfolk Council’s Communication Team sent a press release on 12 December 2017 with the headline, “South Norfolk Councillors raise awareness of Motor Neurone Disease” to all local media, broadcast and print - sadly it did not make it into the EDP. However, the good news is that it appears on the council website. They wrote, “South Norfolk Council unanimously agreed to support the motor neurone disease (MND) Charter at their meeting on 11 December 2017. The MND Charter raises awareness of the needs of local people living with this terminal disease, their families and carers. By supporting the MND Charter the council pledges to promote the Charter to all councillors, council staff, partner organisations and health and social care professionals who deliver services for the Council.” They are also including a short piece with a picture in the next edition of the Link magazine that is distributed to every house and business in South Norfolk.


Scrap Reassessments for Employment and Support Allowance (ESA)

In 2017, the Association ran a general election campaign in which 607 parliamentary candidates pledged their support for an end to ESA reassessments for people with MND - a number of parliamentary candidates in Norfolk pledged their support having been contacted by branch members. During the summer of 2017, our campaigners and people with MND from across the country met with MPs to share their stories of the financial impact of MND, and call for an end to benefits reassessments. Sue Heal and Annette Smith met with George Freeman MP as part of this campaign - see separate article on this page.


The general election campaign led to the Department of Work and Pension’s announcement in September 2017 of a new severe conditions exemption for ESA, which applies to all new higher-rate ESA claimants with a progressive and terminal condition - we expect everyone living with MND who qualifies for the higher-rate ESA and claims for the first time will be exempt from reassessment. Unfortunately, the exemption does not apply automatically to those who were already claiming ESA by the time the exemption was introduced - at that time it was estimated that there were around 600 people in this category. The understanding is that people in this group will need to undergo one final reassessment to receive exempt status.


On 24 November 2017, the MND Campaigns team launched an e-action in the form of an open letter from the MND Association to Sarah Newton MP, the Minister for Disabled People, Health and Work, calling on her for an end to benefits reassessments for people living with MND. As we are all aware, reassessing people with MND for benefits is unnecessary and causes much stress for the people involved. We shared the e-action on our Branch Social Media - Facebook and Twitter. When the e-action closed there were close to 8,000 signatures - thank you to everyone who added their signature and shared the request.


On Tuesday 6 February 2018, the MND Association met with Sarah Newton MP, the Minister for Disabled People, Health and Work at the Department for Work and Pensions (DWP), to discuss the issue of benefits reassessments for people living with MND, and call for a solution for current ESA claimants. The Association was represented by Chris James, Director of External Affairs (and speaker at our 2018 AGM), Emma Adams a trustee and supporter of the MND Association whose husband is living with MND, and members of the policy team. The letter was presented to Sarah Newton at this meeting.


Chris James produced an ESA vlog on 13 February 2018 giving an update on the campaign to end ESA reassessments for people with MND.


There was some concern that although there has been significant progress we have not yet achieved all that we would like, and a small group of campaigners felt a more vocal approach was needed. They organised a polite protest outside Parliament on 28 February, which helped raise awareness of the need to stop unnecessary reassessments; all this on a day when we in Norfolk were rather cut off by the snow! Sally Light, Chief Executive of the MND Association, produced a vlog to address the concerns raised. Sally said, “I think the first thing to say is that we all want the same thing, and that is to stop people living with MND having to go through reassessments in order to receive this benefit".


Thank you for joining our campaign and signing the petition!

As a member of the Care and Support Alliance (CSA) we launched a petition calling on the Government to publish its consultation on social care by early 2018. Social care is vital for people with motor neurone disease and their families, helping them to be supported and maintain their quality of life. Our MND Costs research found that social care is often not adequate for people with MND: the system is often too slow to respond and many people are left to fund their own care, in addition to the many other costs of living with MND.


The Government had promised to consult on its proposals to reform social care. We want the Government to keep that promise and bring forward plans to create a care system which is fit for purpose, and publish proposals for a sustainable solution so people can receive quality care both today and in the future.


The Care and Support Alliance have now closed the petition, following the announcement of a consultation on social care for older people in Summer 2018. On 27 November 2017 the Care and Support Alliance reported that the Government had responded to their petition as they reached the 10,000 signatures needed for a response. In fact there were almost 20,000 signatures in the two weeks since launch!


If you signed the petition you will have received an email with the Government response, if not you can read it here. The Care and Support Alliance issued a response which we are sharing here to show the progress with the campaign.


Government responds to our petition calling for the publication of care consultation - November 24, 2017

The Government has responded to the Alliance’s call to publish a consultation on social care in early 2018.



Co-Chairs of the Care and Support Alliance – Caroline Abrahams (Charity Director at Age UK) and Mark Lever (Chief Executive at the National Autistic Society) said:


“We welcome the Government’s response to our petition that received the support of nearly 20,000 people in two weeks. This called for the Government to set out proposals on how to fix our social care system that currently means more than a million people do not get the basic care they need.


“We are pleased that the scope of the paper is wider than funding and that many individuals and organisations will be given the opportunity to feed into the consultation. However, we remain concerned that while there are separate work streams to look at the needs of working aged disabled adults and carers, it appears that their needs are not being given the same weight. We will work to ensure their voices are included in the consultation.


“Also, as the Green Paper won’t now be published until Summer 2018, we are not going to see reform until 2020 at the earliest. But it is estimated that there will be a £2.5 billion funding gap by 2019/20 which needs to be tackled while the consultation happens.


“The Government needs to plug the gap in social care funding while working on reforms that look at the whole social care system and address the needs of working age disabled adults, older people and their carers.”



17 October Parliamentary Reception 2017 – Norfolk, Norwich and Waveney Branch join 'Strictly' star Charlotte Hawkins to raise awareness of the financial impact of living with motor neurone disease

Members of the branch were invited to a parliamentary reception with Good Morning Britain presenter and former Strictly Come Dancing star Charlotte Hawkins to raise awareness of the immense financial hardship families can face when trying to cope with this rapidly progressing, fatal disease.


More than 130 MND Association supporters from England, Wales and Northern Ireland (including 39 people living with MND) met with 50 MPs and Peers at the Queen Elizabeth II Conference Centre in Westminster. Ann, Barrie and I (Sue Heal), representing the Norfolk, Norwich and Waveney Branch, were pleased to be at the reception. We had a clear message to share with MPs and their researchers about the importance of financial support for those living with MND, and the distress caused by unnecessary reassessments for people living with a terminal diagnosis.


Thank you to everyone who invited their MP to join us. Although most were not able to attend in person some had sent their researchers to find out more about MND and the costs of living with the disease. George Freeman MP had hoped to attend if time allowed, it did not - but, I was able to deliver the report to Elliot King, one of his assistants based at his office in Wymondham who will prepare a briefing for him.


The reception was jointly hosted by the MND Association and the All-Party Parliamentary Group (APPG) on MND. Their report on access to Personal Independence Payment (PIP) for people with MND was launched at the event. PIP is a benefit for people aged under 65 to help pay for the extra costs of living with a disability or health condition. Following an investigation, the APPG found that people with MND can experience problems throughout the PIP process – from finding out about the benefit in the first place, to gathering medical evidence to support their claim, being called for a face-to-face assessment and then being reassessed unnecessarily.


The report makes a number of important recommendations to the Government and others on how to improve access to PIP for people with MND, such as:

  • People with MND claiming Disability Living Allowance should be transitioned to PIP at the same rate unless they request an assessment
  • People with MND on the enhanced rate for PIP care and mobility components should be exempt from further reassessments
  • People with MND should not be called for a face-to-face assessment unnecessarily

Charlotte Hawkins, whose father died of MND in 2015, was one of the speakers at the event. She spoke very movingly about how MND affected her family, and urged MPs to help people with MND to get the financial support and benefits they are entitled when they need them, before it is too late.


She said: “It broke my heart that my Dad still wanted to be able to get out and about but we couldn't get access to the right wheelchair for him in time - not long after it was then too late as he wouldn't have been able to use it. Again - when he began to lose his speech and we looked into what equipment was available to help him - we couldn't get it quickly enough. That makes a difficult and traumatic disease even more frustrating to live with.


MND is tough enough without having to worry about finances and so it’s vital that people with MND can access financial support such as PIP. The system should take into account that, sadly, the person isn’t going to get better and is actually likely to get worse very quickly.”

from left to right Barrie Burgess, Ann Franklin and Sue Heal
Barrie Burgess, Ann Franklin and Charlotte Hawkins


Sally Light, MND Association’s Chief Executive said: “We would like to thank all our supporters who travelled to Westminster to highlight to MPs about the massive financial impact of MND is having, and the devastating effects on families who are struggling to cope. Research shows that people with MND and their families face extra costs of £1,000 a month on average, so people need fast access to benefits such as PIP.


As part of our MND Costs campaign to end the financial hardship of MND, we will continue to lobby the Government to ensure people with MND have better access to the benefits they are entitled to. We fully support the APPG’s report recommendations on access to PIP, and we look forward to working with the APPG and the Government to address these recommendations.”


Click to hear the speeches live on Facebook

Click to find out more about our MND Costs Campaign

Click to see th Executive summary of PIP and MND: Is the benefits system failing people with motor neurone disease?

Click to see the full report APPG-ON-MND-REPORT-ON-PIP.PDF


Friday 6 October 2017 Meeting with local MP George Freeman

Annette Smith and Sue Heal met with George Freeman MP for Mid-Norfolk to discuss the MND Costs report, and to talk at a personal level about the financial impact of living with MND. It was very encouraging to note that he had made time to read our briefing including the brochure MND Costs, and was aware of the physical effects of motor neurone disease.


At the end of the meeting he agreed to follow up our requests with Penny Mordaunt MP, then Minister of State for Disabled People, Health and Work.


In addition he offered the association a spot on his local charity spotlight to gain extra promotion for our branch, our branch featured for a time before the link was removed.


Mr Freeman also offered the option of tea and a tour of Parliament for a raffle prize at a future Norfolk, Norwich and Waveney Branch event.


Norfolk County Council supports the MND Charter - an update

The Charter went to the full Norfolk County Council meeting on 10 April and was ratified by a unanimous vote. Once again Cllr Mooney spoke for the motion and made clear the importance of supporting the MND Charter with its statement of the respect, care and support that people living with MND and their carers should expect.


On Friday 31st March a group of representatives of the MND Association in Norfolk met with James Bullion, the Executive Director of Adult Social Care, and Sera Hall, Acting Director Integrated Commissioning, to discuss ways in which we can work in partnership with the council. Thank you to everyone who contacted us to share their story, either as a person living with MND or as a carer. We were delighted with the outcome of the meeting. Both James and Sera had clearly read the MND Charter and thought about its implications for people affected by MND. James began by mooting the idea of a Social Worker who would take the lead on MND. This was taken up by Sera who thought there would be a willingness to have staff who championed the needs of people with MND and their carers.


There was agreement that many staff would welcome the opportunity for further training. We gave them links to the online training provided on the main MND Association website.


Both James and Sera were concerned to hear of instances where the response to need had not been met in a timely manner. James has also asked for us to feed through to him areas of concern as they arise. As he said, no one goes into social work to do a bad job! In particular he has asked Shirley Basey-Fisher to report any difficulties with social services care being put in place.


After the meeting James Bullion tweeted, “Great to meet @mndassoc today @NorfolkCC @Norfolk ASSD to go through issues. Nothing like hearing users to build understanding.” We felt very encouraged by the meeting.


Since then Sue (Campaigns Contact) and Lindsay Goward (Regional Care Development Adviser) have met twice with Sera Hall to work on the logistics for training courses, and to discuss further the ideas surrounding social workers who could take a lead on MND. Again we are encouraged to learn from James Bullion that the County is actively seeking to increase the number of social workers that it employs.


If you live in Norfolk do get in touch with Sue if you would like to share your experience of services and/or to help ongoing efforts to ensure people living MND and their families get the support they need, when they need it.


More detail about what the MND Charter means in practice can be found on our National Office website at


Our next priority is to encourage the District and Borough Councils to support the MND Charter. Already King's Lynn Borough Council has agreed to support the Charter thanks to the work of Jane Lewis of the King's Lynn and West Norfolk Fundraising Group. Norwich City Council also offered their backing on Global MND Awareness Day 2017 when four City Councillors joined volunteers and supporters outside Norwich City Hall to see it lit up in blue and orange (the MND Association colours). We are very grateful for their support and look forward to meeting with them to discuss ways in which we can work together.


Broadland District Council support the MND Charter

Broadland District Council

Malcolm Chubbock wrote to Cllr David Ward (Chairman of the Council) on 23 May asking him to consider supporting the MND Charter. Malcolm received a reply on 18 July with an apology for the delay caused by the General Election.


Cllr Andrew Proctor, vice Chair, proposed the motion "For Broadland District Council to support the Motor Neurone Disease (MND) Charter." The motion was seconded by Cllr David Ward.


At their meeting on Thursday 20 July 2017 it was unanimously agreed to support the MND Charter in its entirety.


The photo shows the councillors with the MND Charter - Cllr Ward is wearing the chains of office.



The MND Charter.

The MND Charter was launched in June 2012.


The five points of the Charter are:

  1. The right to an early diagnosis and information
  2. The right to access quality care and treatments
  3. The right to be treated as individuals and with dignity and respect
  4. The right to maximise their quality of life
  5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.

By the end of 2012, the Royal College of GPs, Royal College of Nursing, the Association of British Neurologists, the Chartered Society of Physiotherapy, the Royal College of Speech & Language Therapists and the College of Occupational Therapists had signed the Charter. In 2013, the British Dietetic Association signed the Charter, HRH The Princess Royal hosted an MND Charter roundtable, and Oxford City Council became the first council to adopt the Charter. By January 2014, 15,000 had signed the Charter, and in October of that year 700 Ice Bucket Challenge supporters added their signatures to the Charter. In March 2015 over 25,000 had signed the Charter and in May, 16 councils adopted the Charter. By June 2015, 33,630 people had signed the Charter which was presented to the Prime Minister at No. 10 Downing Street.


The launch of Champion the Charter came in March 2016. The Charter is used in local communities to help raise awareness of the rights of people with MND and their carers.


On 7th November 2016, I wrote to Joe Mooney, my local County Councillor. I asked for a meeting to discuss how he could show support for local people living with motor neurone disease (MND) by raising awareness of the disease among councillors and asking them to adopt the MND Charter. Councillor Mooney originally proposed a motion to the full council meeting in December, however unfortunately the agenda was too long and the motion had to be removed. The silver lining was that it could come before a meeting of the Adult Social Care Committee (ASCC) on 23rd January 2017. Any decision made by the ASCC would be binding on the full council. Fortunately Cllr Bill Borrett, Chair of the ASCC, was happy to second the motion.


Cllr Mooney spoke with many councillors ahead of the meeting to gather support for our motion. Alice Fuller, Campaigns Manager (East) provided a briefing for the councillors, and this was added to the MND Association Champion the Charter brochure and my personal statement to form a pack which Cllr Mooney distributed to all members of the ASCC before the meeting.


Charter meeting

On Monday 23rd January, Alice, Lindsay (RCDA), Malcolm, Shirley and I met with Cllr Mooney, Cllr Bill Borrett and Mr James Bullion, new Director of Adult Social Care in Norfolk. Sue Starling, Lead Communications Officer at Norfolk County Council, took photos to add to the press release that I had drafted.


Before the meeting Alice, Lindsay, Malcolm, Shirley and I had an opportunity to speak with some of the councillors. Cllr Adrian Dearnley spoke of the loss of a family member to MND and Cllr Margaret Stone, who had originally trained as a nurse at Addenbrookes in Cambridge, expressed her support and pleasure that we were raising awareness of a disease that she understood. Mr James Bullion expressed his willingness to publicise the five points of the Charter amongst members of staff employed by the council. Cllr Mooney presented our case and quoted from a letter written to him by one of our members, who described MND as 'an evil disease'. Before the vote councillors were invited to comment, we were delighted that Councillors Dearnley, Garrod, Perkins, Sands, Seward and Watkins took the opportunity to voice their support and, by what they said, had clearly taken time to read our briefing. The committee voted unanimously to support the MND Charter.


Councillor Joe Mooney said: “I am very pleased that members of the Adult Social Care Committee voted in favour to support the excellent MND Charter. It will help raise awareness of the needs of local people living with this devastating disease and for that very reason I am very happy with the outcome of the meeting.” Bill Borrett, said: “I fully support this Charter and with the full backing of the Committee, we can actively support the work of the Motor Neurone Disease Association, to make a real difference and improve the lives of people living with this fatal disease.” The Charter will now go to full Council in April for ratification.


It is likely that we will be able to meet with Mr Bullion to discuss ways in which we can work in partnership with the council. In preparation for this we would like to hear from people living with MND, family members and carers with stories of which council services have worked well, and need to be protected, and which areas could have been improved. Please email any suggestions to Sue Heal.


The MND Charter is a statement of the respect, care and support that people living with MND and their carers should expect. More detail about what the MND Charter means in practice can be found on our National Office website at


Articles have appeared in the EDP and the Norwich Evening News: links to the EDP articles are below.


9th December:


27th January:


29th January: