Appealing against an NHS decision not to offer a drug

[heisthegaffer]

Morning all

Firstly I am a huge supporter of the NHS and massively appreciate what they do and the pressures they are under.

As mentioned in another thread my wife has been a migraine sufferer for a long time (25 years plus) so has botox quarterly via the NHS. She really does suffer badly. In December 18 she had 15 days of migraines. My little boy asked me if mummy was going to die of her headaches.

As the time has passed it is getting increasingly hard to get appointments so her quarterly treatments are slipping a little now.

We have been made aware of two new drugs, both quite similar to each other, have been launched tland the NHS have been mulling over whether to offer them. The drugs are injections and whilst initially they are administered by a nurse, long term they will be sent to our house for my wife or me to inject her with. So would save the NHS (presumably) time and money to give.

They have now said they won't be offering although NHS Scotland will be.

My question is whether there are appeal routes at all or if there is any way we could visit Scotland for the first one or two and then receive it at our home?

Anyone come across this at all?

Thanks in advance.

[anonymous-user]

You could try a private Scottish doctor?

[JapanRed]

Thesprucegoose said:

You could try a private Scottish doctor?

This. Try going private.

[pavarotti1980]

heisthegaffer said:

Morning all

Firstly I am a huge supporter of the NHS and massively appreciate what they do and the pressures they are under.

As mentioned in another thread my wife has been a migraine sufferer for a long time (25 years plus) so has botox quarterly via the NHS. She really does suffer badly. In December 18 she had 15 days of migraines. My little boy asked me if mummy was going to die of her headaches.

As the time has passed it is getting increasingly hard to get appointments so her quarterly treatments are slipping a little now.

We have been made aware of two new drugs, both quite similar to each other, have been launched tland the NHS have been mulling over whether to offer them. The drugs are injections and whilst initially they are administered by a nurse, long term they will be sent to our house for my wife or me to inject her with. So would save the NHS (presumably) time and money to give.

They have now said they won't be offering although NHS Scotland will be.

My question is whether there are appeal routes at all or if there is any way we could visit Scotland for the first one or two and then receive it at our home?

Anyone come across this at all?

Thanks in advance.

To be fair NICE are robust in their decision making. It published final guidance not recomending erenumab as it is marketed as an option after all other options have failed, however during clinical studies this cohort of patients were excluded from the study so there is no actual evidence to its efficacy in these patients. In addition it was never compared to Botox (only placebo) so it is difficult to assess whether it is non-inferior or of benefit to the patient. Given there was no comparison can be quite telling in terms of assessing its effiacy. Sometimes its what isnt in study data which says a lot more.

In terms of an appeal its likely this will be done anyway by Novartis, however patient groups who sit on the panel at NICE will be asking questions in the background.

Its pretty mucy cost neutral with Botox but Botox is available at a fraction of the list price to hospitals so maybe that even with homecare arrangements to save on day tariff costs of appointments, Botox may still be cheaper

Do you know if there was much appetite from your wifes clinician to use it in practice?

Thesprucegoose said:

You could try a private Scottish doctor?

You could try a private English doctor too. Private prescriptions are not governed by NICE as the patient is picking up the cost therefore if the doctor is happy to prescribe then you can get a prescription.

Whether the wallet can take it is another matter. Likely to be in the region of £400 a month for erenumab and £470 for fremanezumab

Edited by pavarotti1980 on Friday 27th September 12:37

Edited by pavarotti1980 on Friday 27th September 12:41

[heisthegaffer]

pavarotti1980 said:

You could try a private English doctor too. Private prescriptions are not governed by NICE as the patient is picking up the cost therefore if the doctor is happy to prescribe then you can get a prescription.

Whether the wallet can take it is another matter. Likely to be in the region of £400 a month for erenumab and £470 for fremanezumab

Edited by pavarotti1980 on Friday 27th September 12:37

Edited by pavarotti1980 on Friday 27th September 12:41

Thanks very much for this post, appreciate the time taken to write it.

At her last appointment her doctor seemed very keen to migrate her to the new treatment as the botox hasn't cured her completely, the last few quarters it has been quite inconsistent of how effective it is.

Who knows whether the new treatment will work? Anything is worth a try.

We may have to go down the private route but it will put considerable pressure on us financially.

It's very frustrating.

Thanks again mate

[pavarotti1980]

heisthegaffer said:

Thanks very much for this post, appreciate the time taken to write it.

At her last appointment her doctor seemed very keen to migrate her to the new treatment as the botox hasn't cured her completely, the last few quarters it has been quite inconsistent of how effective it is.

Who knows whether the new treatment will work? Anything is worth a try.

We may have to go down the private route but it will put considerable pressure on us financially.

It's very frustrating.

Thanks again mate

Ask the doctor about whether any compassionate use schemes available from Novartis which means could get it free of charge

[heisthegaffer]

pavarotti1980 said:

Ask the doctor about whether any compassionate use schemes available from Novartis which means could get it free of charge

Thanks - I will do.