Issues with GP

[GillB]

MNDConnect

My GP is refusing to prescribe me Rilozole, as they say it is a controlled drug, and it will have to come from a secondary care provider. They also say they do not operate a shared care protocol. My original prescription came from my neurologist and I got four months supply. My MND centre is in Sheffield, over an hour away. My MND nurse is aware but when she rang my doctors they refused her request too.

Any advice please?

[MNDConnect]

Dear GillB,

I am sorry to hear your GP is not being at all co-operative. Shared care protocol refers to the usual process of the Neurologist prescribing the initial prescription for Riluzole which the GP then picks up and continues with prescriptions from then on.
If you could please let me know where you live in the country, I will speak to the MND regional team to look into this for you.
Kind regards
Jacqui Anderson
Senior MND Connect Adviser

[GillB]

Hi Jacquie

My Regional coordinator is Jayne Thompson. I am in Lincolnshire but my MDT is in North Lincolnshire, as I am two minutes from the county line. My doctor is in Linconshire.
.

[MNDConnect]

Dear GillB

Many thanks. I will make contact with her to discuss.

Kind regards
Jacqui

[keno]

My GP could not prescribe it because colour code would not allow on the system.
mnd nurse brings it every 3 months.
GP prescribes everything else

[GillB]

keno

Thanks. I think that is the issue with mine too as it is red code. Waiting to hear if the MND nurse can sort something out.

[Ellie]

GillB As if your life needs to be more complicated 😟

Hopefully it can be sorted xx

[shelly21]

I had the same problem and I got fed up so complained to both g.p and hospital. It is the g.p who sent us to the neurologist so back to them for prescribing. They are our supposed lead in our management of care.

[GillB]

shelly21

It is annoying isn't it? 🤬

[MNDConnect]

Dear Gill,

Just a quick follow up to let you know I have spoken to Jayne and she is going to follow this up with the Sheffield care centre nurses and she will be in touch with you.
Kind regards
Jacqui
Senior MND Connect Adviser

[GillB]

MNDConnect

Thank you. The nurse has arranged for it to be couriered to me and it has just been delivered.

Meanwhile my AV is lobbying our MP as North Lincolnshire has not adopted a Shared Care Protocol.

[MNDConnect]

Very pleased to hear this Gill.

Thank you for letting me know.

Kind regards

Jacqui

[DeeH]

GillB

Just to add, In Cumbria. Neurologist in Newcastle, prescribes and we get it delivered by courier every 3 months.

Possible way to circumvent the weird rules.

Glad you are getting assistance.

Hope you get it resolved.

[Ellie]

The nurse has arranged for it to be couriered to me and it has just been delivered.

Do you think the same will happen next time too GillB - have you 1 or 3 month's supply? xx

[GillB]

DeeH

I think that is what they will do in future unless we somehow force the GP to adopt a shared care protocol.

Ellie

They sent three months supply and I got another packet when I was in for my peg so I'm ok for a while

x