Discrimination

[calebsmum]

Are people with MSA coming across discrimination within the NHS? We are finding that certain services are available to people with MND but not MSA!!! For example, the Bristol communication centre has specific slots for people with MND but not MSA - despite the fact that my husband’s lack of speech is far worse than our friend who had MND. Also I asked for a cough assist machine, he should be able to have one because he has CHC funding, but the training to use one is available to people with MND but not MSA in Somerset. I have written a strongly worded complaint to the Integrated Care Board, but there should be media coverage about MSA.

[Monkeyfeet1]

i think they just don’t understand. Xx

[Milomonster]

I think that is the Rob Burrow effect which has really helped the MND community. MND is so fast so I can understand they would need to jump the queue however people with MSA don't have time on their side either. We have to really help raise awareness. Write to your MP, Health Secretary, share on social media - we get the word out there.

[Yanno in reply to Milomonster]

I have to agree it's an awareness situation. The example I use is that most people with MSA will need a wheelchair at some point. There should be an automatic 'pathway' that says someone with MSA has quick access to the wheelchair service once the need is there.

I believe we, those in the know about MSA, and the MSA Trust need to constantly bang the drum about this.

Take care, Ian

[Milomonster in reply to Yanno]

We can bang the drum too - my son is doing a half marathon soon and we have a local MND charity that has raised 0.5m in one year and they have agreed to share on their socials - I'm going to get some help from one of our marketing people at one to help draft the comms to get it impactful - much as I want the money, the awareness is more valuable.

[Craft7]

Think many issues are due to the fact that MSA is rare so not well known hence getting support and help can be majorly difficult and exhausting . My advice would be to contact MSA Trust and your local hospice .

[PineEater]

Dear Calebsmum, HiYou are absolutely justified to talk about the discrimination being experienced by MSA fellows. Citing rarity of MSA disorder as a reason by some people to justify the discrimination being experienced can not justify the attitude of all the related people- neurologists, speech therapists, SALTs, GPs, PTs, OTs and all other health professionals and administrative people towards MSA. In fact, that merely reflects the inability of these people to gather knowledge about such disorders like MSA , PSP, CBD etc. Why don't they acquire knowledge about the sufferings of the fellows with such disorders? Googling of these disorders can provide them a feeling of their problems, sufferings and requirements and therefore they can be in a position do away with the discrimination you have talked about. Please continue registering complaints with the appropriate people to provide relief to the sufferers. Best wishes

[Schmall]

Perhaps you could ask the MSA trust fir assistance? Samantha (nurse practitioner) has kindly got in touch with my husbands GP before when we were struggling to get a Parkinsons nurse.

[SamanthaMSAT Moderator Staff]

Hi Calebsmum,

We at the MSA Trust are trying to raise awareness of the needs of people affected by MSA through educating Health and Care Professionals and through trying to influence the system as a whole through the pathways and toolkits that have been developed over the past few years.

Examples are here:

england.nhs.uk/rightcare/wp...

nnag.org.uk/optimum-clinica...

However, these are good practice documents whereas there are NICE Guidelines for MND which seems to give a certain degree of priority to those with that condition.

Please do contact our MSA Specialist Healthcare Professionals team and we will do our best to help in individual circumstances.

Kind regards, Samantha MSAT nurse specialist.