Feeling abandoned

[Guest]

Hello,
I was officially diagnosed with MND in September. I feel like I have just been left to deal with this with the help of my amazing parents! I don’t hear or see any of the MND support team unless I have a hospital appointment to see the consultant in clinic. My mobility is steadily declining, I can still walk, more confidently in the house but need my stick outside the house. I would like to start thinking about the use of a rollator in the house and maybe an electric chair for outside. We are going on holiday to Florida in June and I’m wanting to take a wheelchair with me. Please could you give me some advice on who I could talk to to get this much needed help
Thanks
Jen

[Terry]

Hi Jen,

I would always advise people to make contact with their local hospice as they have many ideas on how to live life better and specialists like OT so.

Your OT should be able to get a rollator for you quite quickly and should also be able to refer you to the wheelchair services. Things there can take a long time so best to start that ball rolling.

Love Terry

[Annb]

Hello Jen
I am so sorry to hear that you feel abandoned by the system.This happened to me too. I am so glad you have support from your family. The way MND Care is organised depends very much on where you live. There is a NICE Protocol but local Trusts interpret it in different ways. I self-referred to an MND Hospital in London because I found my local hospital lacked MND experience. Local support is all there but it is sometimes is just not joined up. There should be a Multi-disciplinary Team looking after you but you will need to keep asking questions until you know all the different Services on offer and how they can help you. Do you have an MNDA Visitor? I have found mine invaluable. She knows the system and has helped me to get better care. I agree with Terry that you should ask to be referred to your local Hospice. They should be able to help not only you, but your whole family. Mine offers OT and physio advice and an MND Nurse. They also have a counselling service. The wheelchair service should be able to provide you with both a chair for the car when you go out and an in/out electric wheelchair. When you go on holiday contact your airline well before you leave and ask for Passenger Assistance. They will advise you about special travel arrangements for both yourself and any equipment you may need to take with you. This usually travels free of charge. Don't despair, it takes time for everything to be organised. I was as diagnosed in August and it has taken until this month for things to be put in place.

Enjoy your holiday!

Annb

[Guest]

Hi jen, have just seen you are from Newcastle. I don't know if you are interested in excersising but I go to a super little gym that has just opened on gateshead
All the machines are to be used with a wheelchair, run by a guy who is paralysed. It's really cheap to join and I travel an hour to get there but find it really helpful. I know this doesn't answer any of your questions but thought you may be interested in this.

[MNDConnect]

Hi Jen

I am sorry to hear that you are feeling abandoned. Are you in touch with your local MND Specialist Nurse?

Do you know if anyone has referred you to an Occupational Therapist (OT)? The OT would be able to carry out an assessment for you and provide a rollator as well as make a referral for you to your local Wheelchair Services for an assessment for a powered wheelchair. If a referral to an OT hasn't been made you can self-refer by contacting the Adult Social Services Team at your local council.

We produce an information sheet on wheelchairs which might be useful. You can access it here 11c-equipment-and-wheelchairs

We also produce an information sheet on travel which includes a section on wheelchairs on planes which might be helpful 12c-travel-and-transport

I did see in another post that you'd mentioned driving and wheelchair accessible vehicles (WAV). We have some information on both of these topics 12a-driving and 12b-choosing-the-right-vehicle

Please do know that we are here to support you. MND Connect is a small team, there are 5 of us and we all have healthcare backgrounds. You can contact us if you have any questions or concerns or if you would just like someone to talk to. We are available either via the forum, via email at [email protected] or on our Freephone number 0808 802 6262.

Best Wishes
Rachel

[Staffie]

Thank you for your reply, do you know if there is specialist MND OTs that would be able to come out to my house and offer some advice and guidance?
Thanks
Jen

[Annb]

Hello Jen

Have you been referred to a hospice for support? If not, ask your Consultant whether this is possible. I have a MND nurse, OT and Physio who all visit me at home.
Ann

[MNDConnect]

Hi Jen,

The Community OT will come out to your home to carry out an assessment for equipment and adaptations. Unfortunately they are not specialist MND Occupational Therapists but usually they understand that MND is a progressive condition and they will consider your future requirements when making their assessment.
You can ask your GP for a referral to the OT or you can contact your local social services to self refer.
If you have any further questions please do not hesitate to ask.

Kind regards

jacqui