MND Association. Norfolk, Norwich and Waveney Branch
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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 mndconnect@mndassociation.org 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.

The results are presented here.

 

More information about how the MND Association plans to use these results to inform its campaigning can be found here.

 

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. The outcomes of this meeting were reported on the Association’s website.

 

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 blog and 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 are pausing their petition for now, 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.

Alliance

 

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.”

 

APPG

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.”

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

Read the National Office website news section covering the reception

 

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, 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. This has now been uploaded to his website and social media platforms, you can see the MND Association spotlight here: http://georgefreeman.co.uk/content/mnd-association

 

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.

 

 In December 2017, the Campaigns team wrote an update on the MND Costs Campaign which can be found here

 

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 www.mndcharter.org

 

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.

 

http://www.edp24.co.uk/news/city-hall-lights-up-in-brilliant-colours-to-mark-partnership-to-help-those-with-a-deadly-disease-1-5072902

 

http://www.edp24.co.uk/news/http-www-edp24-co-uk-news-city-hall-to-turn-orange-and-blue-in-recognition-of-motor-neuron-disease-1-5061438-1-5061438

 

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 www.mndcharter.org.

 

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

 

9th December:

http://www.edp24.co.uk/news/health/campaign_to_have_norfolk_county_council_adopt_motor_neuron_disease_charter_is_launched_1_4809663

 

27th January:

http://www.edp24.co.uk/news/health/victory_for_wymondham_motor_neurone_disease_campaigner_1_4862913

 

29th January:

http://www.edp24.co.uk/news/health/wymondham_widow_hopeful_after_councillors_back_motor_neurone_disease_association_charter_1_4867203