MND Association. Norfolk, Norwich and Waveney Branch

MND Connect

 

Accredited Site

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: mndconnect@mndassociation.org

(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:

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: www.mndassociation.org/benefitsadvice

 

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

 

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 www.carersmatternorfolk.org.uk or phone them on 0800 083 1148.

 

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

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

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.

 

 

Samaritans

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 www.eastangliandriveability.org.uk/PDF/EAD-Leaflet-2011-SinglePanels.pdf

 

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

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 http://www.remap.org.uk/contact-remap/

 

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 jcord@listening-books.org.uk You can also apply online by visiting https://www.listening-books.org.uk/join-us.aspx 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.