MND Association. 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.


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.


Carers Matter Norfolk

They say, “We want to make carers lives better and that is why we offer live chat and telephone support for carers in Norfolk”. Contact them via their website or phone them on 0800 083 1148. You can access their handbook HERE


Live chat support is available by phone or via their website at the following times:

  • Monday-Friday 8am-8pm
  • Saturday 4pm-8pm
  • Sunday 8am-12noon

The advice line will provide listening support, information, advice and guidance, support-planning and emergency plans.


Carer Connectors will offer face to face support for carers to find out what matters to them and work together to achieve this via a support plan with regular reviews. Advocacy can be provided. They will also work closely with carer support volunteers who can provide a befriending service or some emotional support.


Carers Matter Norfolk are also offering counselling - sessions with a trained counsellor either by telephone or online, e.g. by Skype or FaceTime


Education and training - individuals an attend carers groups to access events on such subjects as coping strategies. They are developing an e-learning portal and will let us know when this is available.


Look for Carers Matter Norfolk on Facebook where they post interesting and useful articles about current issues affecting carers.


Carers Matter Norfolk, is the new service that supports unpaid carers in Norfolk. It is funded by Norfolk County Council and NHS Clinical Commissioning Group Partners, as part of their commitment in creating a carer-led support service. It went 'live' on Sunday 8am 1st October, 2017.


As this is a relatively new service please let us know if you find the new services useful or if you feel that they are not meeting your needs so that we can offer feedback.


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.



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.




If you need to talk to someone about anything telephone 116 123. Their website says this number is free to call from anywhere in the UK; you do not need to be suicidal to phone!



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.



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 and ticking the box to apply for a free place.


“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.