Norfolk, Norwich and Waveney Branch



Useful links


MND Connect

The MND Connect team offers information and support on all aspects of motor neurone disease, including symptom control, practical management, improving quality of life, clinical research and signposting to other organisations. Further information on the main MND Association website can be accessed by clicking on MND Connect.


MND Connect is available Monday to Friday between 9am to 5pm and 7pm to 10:30pm. You can call direct on 0808 802 6262 or e-mail:

(Calls to this number are free from landlines and mobile phones within the UK and do not appear on itemised bills).


If you struggle with English please let the adviser know. Advisers can arrange for an interpreter to provide a simultaneous translation between your chosen language and English, though they many need to book a three-way call between adviser, interpreter and caller at a mutually convenient time.


The service is for:

  • people living with MND
  • carers
  • family members
  • health and social care professionals
  • MND Association staff and volunteers

or anyone else affected by MND.


Norfolk County Council's Adult and Children's Social Services.

The website provides information about

  • Care and Assessments
  • Support to stay at home
  • Health and Wellbeing
  • Looking after someone
  • Housing
  • Protecting someone from harm
  • Disabilities - with links to adaptations in the home, blue badges and disabled travel passes.

They are open 24 hours for emergencies - telephone 0344 800 8020.


For adult social care services information please visit here


If you need help with your care, or need to report an adult at risk of harm, you can call 0344 800 8020. This number is open 24 hours a day.


Text: 07767 647670

Minicom: 0344 800 8011

Fax: 0344 800 8012


For urgent out of hours help from Social Services please see here or telephone: 0344 800 8020.


Assistive Technology Team, Norfolk County Council

Assistive technology is a range of electronic gadgets that can help you to live independently in your own home. You can find more information here.


I Will Always Be Me, a book to help you bank your voice

The e-book used to assist in voice banking: A first-of-its-kind e-book which banks people’s voices as they read the story aloud, which was launched on 15 February 2022.


I Will Always Be Me is written from the perspective of someone living with MND. It takes less than half an hour to read and is designed to be a shared experience for family and friends to be part of. Upon finishing the story, the recording is uploaded and transformed into a digital voice by SpeakUnique which can then be used with communication devices when needed.


The MND Association will provide funding for people with MND living in England, Wales and Northern Ireland to take part, thanks to donations from Dell Technologies and Intel. This free service also extends to people living with MND in Scotland, with funding provided by MND Scotland.


Global companies Intel, Dell Technologies and Rolls Royce came together with the Association to develop this book as a part of the NextGen Think Tank which was created in 2019.


Watch the film and read more on the MND Association website.


Councils in Norfolk respond to Covid19.

Each Council in Norfolk is updating their information regularly to show contact numbers and the impact on local services. Norfolk County


Council have a designated phone line 0344 800 8020 for people classed as vulnerable, or for those in need of support either now or in the coming weeks, or visit Norfolk County Council website for help.


Breckland District Council - Coronavirus information.


Broadland District Council - Coronavirus information.


East Suffolk Council - Coronavirus information.


Great Yarmouth and Waveney Borough Council - Coronavirus information.


North Norfolk District Council - Coronavirus information.


Norwich City Council - Coronavirus information.


South Norfolk District Council - Coronavirus information.


Home but not alone - extra support available in Suffolk

A new Suffolk-focused community service has been set up to support people who need help during the COVID-19 pandemic. The telephone number for those in genuine need of help is freephone 0800 876 6926 and will be staffed from 9am to 5pm, seven days a week.


More details are available here.


Palliative Care Helpline

You can call at anytime, the line is open 24/7. Phone the Hospice at Home Advice Line on 07867 156705.


Benefits Advice

Following our successful pilot work the Association has now established a benefits advice service for people with and affected by MND in England and Wales. The service is available by telephone, email and webchat.


Telephone: 0808 801 0620 (free to call)

Email and webchat:


The service is provided in partnership with Citizens Advice Cardiff and Vale and will:

  • Help users identify the benefits they may be eligible to claim and how best to claim them
  • Deal with complex benefits issues, including appeals against benefits decisions
  • If you struggle with English please let the adviser know. It should be possible to find an interpreter, although this can sometimes be immediately it is most likely that a three way call between the adviser, interpreter and caller will be booked at a mutually convenient time.


Carer’s passport at the Norfolk and Norwich University Hospital

The passport should be available on all adult inpatient wards at the Norfolk and Norwich University Hospital. The issuing of the passport is at the discretion of the nurse in charge. It is designed to support carers who are visiting and caring for patients staying in hospital. They say, "The Carer’s Passport is for unpaid carers of any age who are willing to provide aspects of care while a patient is in hospital. Aspects of care could include emotional and psychological support to maintain health and wellbeing, personal care and assisting at mealtimes”.


The Carer’s Passport offers some concessions as a small gesture of thanks and appreciation, which include discounted meals in the main restaurant and the coffee shops in the West and East Outpatient areas as well as free parking.


For more information visit:


For more general information about the carer’s passport scheme visit


Carers Matter Norfolk


Are you helping or supporting someone who is living with MND? If so, contact Carers Matter Norfolk. By Lindsay Goward.


Covid19 and the lockdown has been particularly difficult for people caring or supporting someone with a diagnosis of MND. You may not have been able to have family support or support from groups and friends. Norfolk County Council has commissioned new enhanced care services from this September which will hopefully offer more support to carers.


Carers assessments are now being carried out by Carers Matter Norfolk rather than going through Adult Social Services. If you need an assessment contact the Carers Matter Advice line on 0800 083 1148 or request one through the website. Alternatively you can ask your Association Visitor or a health or social care professional to refer you.


The assessment can offer you advice, information as well as the help and support you need in your carer role. If you need more support, you may be referred to a local Carer Connector who can look in more detail at what can assist you to continue caring, and to support your health and wellbeing. Unlike previously the assessment is not a one off thing, instead an adviser will contact you regularly to see how things are going and you can ring as often as you want if your needs change or you just need a listening ear.


An assessment can lead to you being offered practical help in the form of a short break, a grant from the health and wellbeing fund, counselling or help to access education and training. A short break can be someone staying with the person so you can go shopping, a few days for you to recharge your batteries or even help towards a joint holiday. The grants can be for anything that may enhance your health and wellbeing such as funding massage, an iPad or a spa day out. The definition of a carer for this service is wide, you do not have to be living with the person you support or caring for them full time. Contact the advice line for more information. It is hoped this new enhanced service will give you, as a carer, some practical support at a time when you need it.


Call the Carers Matter Norfolk advice line on 0800 083 1148 to have a chat with our friendly advisers. It is open from 9am to 5pm Monday, Wednesday and Friday, and from 9am to 8pm on Tuesday and Thursday. You can also contact the service by emailing or sign up or be referred for support via the website


Suffolk Carers Matter

Suffolk Carers Matter offers an Advice Line where you can receive tailored information, advice and guidance, emotional support, signposting etc. If you are living in Suffolk and need advice call 01284 333035. Their Carer Advisers can also refer you to their free counselling service if this is helpful.


They also have online Live Chat via the ‘Ask’ bubble on their website, which allows you to ask a quick question at any time during their opening hours.


They are open for calls and online chat 7 days a week at the following times:

Monday - Friday 9am-8pm

Saturday - Sunday 10am-2pm


The Advice Line Team is fully trained in supporting unpaid carers. They are also trained to undertake Carers’ Assessments, and can help you explore all aspects of your caring role to help ensure you are receiving the right support.


Caring Together

Suffolk Caring Together is a charity supporting carers of all ages across Norfolk, Peterborough and Cambridgeshire. You can find out more about what is available to you by calling their specialist carers services team on 0345 241 0954 or you can email  Alternatively download their flyer here.


The Adult Services Development Team at Norfolk County Council

have Information sheets available on a number of different topics (including Crisis or Urgent Help - finances, and Information for carers). You can order these using this order form.


Equal Lives

Equal Lives support people to empower themselves to live independent lives. Their website has a range of factsheets on topics including 'Using a service provide or self-employed worker' to provide care. They provide information about topics such asWelfare Benefits and how to claim them, Support Services such as their Payroll Service and much more. They also run information and advice sessions around Norfolk that include subjects such as Benefits issues and advice, and Getting access to the services you need. For venues and sessions click here.



Norfolk Swift Response

Responds to urgent and/or unexpected care needs - telephone 0344 800 8020.




The Samaritans are available 24 hours a day, 7 days a week, 365 days a year to provide confidential listening support to anyone who is distressed, depressed, distraught, in utter despair, or suicidal via their freephone number 116 123 or via email on


The number is free from anywhere in the UK. You do not need to be suicidal to phone!


Age UK Norfolk.

Our two main services are still operational; our Information and Advice Helpline and our Telephone Befriending service although the help line is now running as a call back service.


Age UK Norfolk Information and Advice Helpline:

T 0300 500 1217 Open 10am-4pm Monday, Wednesday and Friday and 10am – 1pm Tuesday and Thursday (this is currently a call back service)




Age UK Norfolk Telephone Befriending Service:

T 01603 785 223




Independence at Home

The Motor Neurone Disease Association provides a number of grants to help towards the cost of living with the disease and some items are funded in part by statutory services, but despite this sometimes a little extra money is needed to complete a purchase or adaptation. Independence at home supports people with a variety of conditions including MND.


To make an application to Independence at Home you must be in financial need and unable to afford the equipment or building work yourself or to obtain the full funding that you require from statutory services or the MND Association. You have to be referred to them by a professional worker from health, social care or a charity. In the case of the MND Association Lindsay Goward, Area Support Coordinator or your Association Visitor should be able to help you. They can apply using the 'how to apply' page of this website.


The Grant Categories and Allowable Items are as follows:

  • Mobility and Travel Equipment
  • Special Disability Equipment
  • Home Adaptations
  • Communications Equipment
  • House Repairs
  • Kitchen Equipment
  • Beds and Bedding
  • General Furnishings
  • Miscellaneous


More information about each of the categories is available here.


East Anglian Driveability

An independent charity that specialises in enabling outdoor independence for people who have a disability or who need help getting back to driving. Their services include assessment of fitness to drive as well as specialist advice, information and recommendations regarding car adaptations for passengers.

They operate from three centres in Thetford, Spalding and Colchester as shown on their website. For six months they are trialling outreach centres at Gorleston and Kings Lynn.


A leaflet can be downloaded at


All assessments are booked through the Thetford assessment centre on their main number 01842 753029; opening hours Monday to Friday 9am – 4:30pm. Where applicable there is a subsidised fee for individuals so please ask about any costs at the time of booking.


Gorleston operates on the 1st and 3rd Thursday of every month at The Norfolk Coastal Centre, NR31 9AQ.


Kings Lynn operates on the 2nd and 4th Thursday of every month at 11 Acer Road, PE34 3HN


Thank you to Cathy for making us aware of the services available.




Remap is a national charity working through local groups of skilled volunteers to help people with disabilities achieve independence and a better quality of life. They do this by designing and tailor making equipment for their individual needs. This helps them carry out essential daily tasks without having to ask for assistance, or take part in leisure occupations or sports that would otherwise be impossible for them.


They make no charge for the devices they make. If you can’t get a commercial product then ask them and they may well be able to help. You can either ask your occupational therapist or other healthcare professional about a referral to Remap. Alternatively you or your carer can also contact them directly. Their website says, “There are no criteria to meet or forms to fill in, it’s just a question of whether we have the knowhow”.


To contact remap by sending them a message click on the link


Alternatively the local contact details are as follows:

Norfolk Central

Contact Dr Andrew New on 07905 243122


Great Yarmouth & Lowestoft

Contact Reg Nicholls on 01493 728050


Suffolk East

Contact Mr M Allkins on 01473 726201/609775 or Quentin Thurtle on 01473 420805


Remap presented a stand at the annual conference of the Motor Neurone Disease Association conference at the East Midlands Radisson Blu on 10 September. I was pleased to speak with Maurice and Neil, both volunteers, and to get an idea of the huge range of problems they have solved for individuals. What came across very clearly was the enthusiasm they have for the work they do – they love solving problems.



 UK Power Networks Priority Services Register

UK Power Networks keeps the lights on across the East of England, London and the South East, regardless of who you pay your electricity bills to. You can call them on 105 if you have a power cut.


The company has a Priority Services Register to provide free additional help, support and advice during a power cut to pensioners, families with young children and people with special needs, disabilities or health conditions – clearly useful for people living with MND.


To apply visit ring 0800 169 9970, or email


Norfolk young carers needs assessment guide

Norfolk County Council's ambition is for all children in Norfolk to achieve their full potential and have their needs met at the earliest possible opportunity so that no child in Norfolk is left behind. The Needs Assessment will consider how caring affects you, both physically and emotionally and how it affects your progress at school, college or work. It will also include how caring affects your social life, friendships and leisure.
What you feel and want will be taken seriously and listened to in an assessment. Poster here


Free memberships available for audiobook library service

Audiobooks are a lifeline for many people who struggle to read in the usual way, providing vital access to the comfort, relaxation and joy of reading; do you know someone who would benefit? Listening Books is a national charity that provides a postal and online audiobook library service to children and adults who struggle to read or hold printed books due to an illness, disability, mental health or learning difficulty, and they have recently received funding to offer a number of FREE memberships to people living in Norfolk and Suffolk who would find the usual membership fees (from £20 - £45 per year) a barrier to joining the service.


The library has a huge range of brilliant fiction, non-fiction and educational audiobooks including new releases and bestselling authors. Titles are available as MP3 CDs sent through the post (all postage is included in the membership), and by downloading and streaming through the website or app which can be accessed on computers and portable devices such as tablets and smartphones.


You can apply by contacting Jo Cord on 020 7407 9417 or email You can also apply online by visiting here.


“Listening Books is a life saver and when I phone you are always so kind and helpful,” Listening Books member.



Head Up collar

Many people with motor neurone disease suffer from loss of strength in the neck which causes the head to droop to the front or to the side. The Head Up collar was designed to ease pain and make life easier for people with motor neurone disease by supporting the muscles of the neck. It should now be available through the NHS. Anyone considering using the Head Up collar should be properly assessed by an occupational therapist to check that it meets their needs. It is also available for purchase from the company TalarMade.


The lead clinician in the Head Up project was Chris McDermott, Professor of Translational Neurology at the University of Sheffield and Consultant Neurologist at Sheffield Teaching Hospitals. The Head Up collar was designed with input from people living with motor neurone disease. Its development was funded by National Institute for Health Research’s Invention for Innovation programme and the Motor Neurone Disease Association.


To see how it works and the advantages it can bring watch the YouTube video here.


Travel Insurance

Some people have experienced difficulty accessing travel insurance whilst participating in a clinical trial. According to MND Connect the regulations say participating in a clinical trial shouldn’t affect insurance in a different way than the underlying diagnosis. Tell the insurer MND-SMART is a phase 3 trial and the medicines are approved for use in other neurological conditions. The possible medicines are trazodone, memantine or placebo.


They are aware of participants who have got insurance through All Clear (though providing this information doesn’t constitute a recommendation). MND Connect keeps an up to date list of insurers which people with MND have successfully used.


Get in touch with MND Connect if you need further advice. MND Connect is available Monday to Friday between 9am - 5pm and 7pm - 10:30pm. Calls to this number are free from landlines and mobile phones within the UK and do not appear on itemised bills. Call them on 0808 802 6262 or email