Motor Neuron Disease (MND)- Status & Blog


1. if you apply for a Blue Badge - apply online & submit a copy of DS 1500 Fast Track Top Prioriy Form. These we were told should be raised by the MND Clinic this did not work for us & we found out that the GP can raise the DS 1500 form GP ubmitted DS 1500 & a request was e-mailed to The Blue Badge Dept. requesting high priority (supposed to be 48 hours) & attaching a DS 1500 - we are still waiting for the blue badge. now after 3 months.  History- We requested a Blue Badge form from the Council Blue Badge Dept. We sent the paper form around the 6 May 2016. Receiveds blue badge on the 26 July 2016 only after personally persuing by telephone & then visit to the Council.. Following up progress of our paper application form during June 2016 revealed the Blue Badge Dept. had no record of our application, the form was held by the Post office for collection by the Blue Badge Dept. who woulfd not collect the form due to a small postage charge & the form was returned to us 2 months later by the Post Office

The Blue Badge paper form is designed for the disabled person to drive

The Blue Badge online form is designed for another driver eg husband & allows more detail to be submitted to support the application

Discussion with the Blue Badge Department revealed that the patient will only get top priority & be fast tracked if the patient has 12 months or less to live, the DS 1500 is ignored & the patient is put in the general list of applications to be deal with in turn when reached in the backlog of applications. However the patient being grouped with all the other applications does get 3 years of Blue Badge use before it expires.


2. If you want a Disabled Toilet key - (Special manual key usually manufactured by company called Radar) Operates locks & can be used nationally in around 9000 disabled toilets operated by councils, shops, shopping centres, pubs, restaurantss, clubs, cinemas, theatres & sports centres in  the UK. Contact your GP who will have a list of where the key can be obtained (in our case a local Tourist Information Office for £4.37). You can also get one by searching on the Internet for Disabled Key. We contacted our local Council & are still waiting for a reply. Anyone can apply for a disabled toilet key regardless of whether they are disabled or notso there is no control thats got to be wrong & many non disabled people in public places use the disabled toilet if its more convenient & the opportunity arises - that is wrong.


3. Personal Independance Payment (PIP) - around £80 per week assistance (£139 in our case because of the diagnosis. Applied to local council around the 6 May 2016. No reply or communication received until we personally chased the PIP progress.  Applied online & submitted a copy of DS 1500 Fast Track Top Prioriy Form. These we were told should be raised by the MND Clinic this did not work for us & we found out that the GP can raise the DS 1500 form. Only when we submitted a copy of the DS 1500 fast track form from our GP with the PIP application form with a progress chasing telephone call & referal to the DS 1500 & the seriousness of the diagnosis did we get the PIP payment started on the  (TBA) July 2016 which was backdated to around 6 May 2016


4. Hospital Patient Transport - You can not use your own wheelchair / transit chair unless it is Crash Tested to ISO 7176. you will have to use the Hospital Patient Transport wheelchair / transit chair. We have  an Excel G-Lite Pro Transit Chair & we can not use this as it is not to ISO 7176. Excel inform us that few of their wheelchairs / transit chairs are to the standard. Patient Transport need to be told that a  wheelchair is required & that the carer will acompany the patient.


5. Applying for Grants - currently 2017 your total  savings must be less than £23500 & very detailed forms will need to filled in but the Council Ocupational Therapy will help you. The MND Association may be able help towards finance.


6. Care Available - Refer to your local Carers (eg Oxfordshire) Care list

   Care Services Available -

        Carers Oxfordshire                              www.carersoxfordshire.org.uk

        Emergency Cares Support Service www.carersoxfordshire.org.uk

        Social & Healthcare Team                   https://www.oxfordshire.gov.uk/cms/content/requesting-assessment

        Care Quality Commission                   www.cqc.org.uk

        Citizens Advice                                      www.caox.org.uk   &    www.adviceguide.org.uk

        Gov UK Benefits Advice                       www.gov.uk

        Age UK                                                     www.ageuk.org.uk

        Rethink Mental Illness ?                      

        My Care My Home                                www.mycaremyhome.co.uk

        Live Well                                                 https://livewell.oxfordshire.gov.uk

        Home Support Options                        www.ageuk.org.uk/oxfordshire/our-services//home-support-options/

        Winter Fuel Payment                           www.gov.uk

        Home Delivery Servies                       www.wiltshirefarmfoods.com

        Healthwatch                                           www.healthwatchoxfordshire.co.uk

        Time Out For Carers                           e-mail carersreferals@oxfordshire.org.uk

        Good Neighbour Schemes               https://www.ageuk.org.uk/oxfordshire/community-information-network/good-neighbour-schemes

        Community & Voluntary Action       www.ocva.org.uk

        MND Association (local)                     www.oxfordshire-mnd.org.uk

        Turn 2 Us                                               www.turn2us.org.uk

        Talking Space                                        www.talkingspaceoxfordshire.org

        Silver Line                                              www.thesilverline.org.uk

        Moving & Handling                             www.carersoxfordshire.org.uk

        Back Care                                               www.backcare.org.uk/carers

        NHS Direct                                             www.nhs.uk

        Local Support                                        wwww.carersoxfordshire.org.uk/supportgroups

        Rally Round                                           www.rallyroundme.com/carersoxfordshire



   District Nurses


   Hospital MND Clinic in Neurology Dept.