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Cannabis-Based Medication for pain and epilepsy
- Karen from Brighton
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1 week 1 day ago #292667 by Karen from Brighton
Cannabis-Based Medication for pain and epilepsy was created by Karen from Brighton
Hi everyone, I have some tricky Medical Cannabis questions please.
I already have muscle pain as a result of Chronic Fatigue Syndrome. I’m currently moving onto a new anti-seizure medication (ASM) for my epilepsy, a process which will take several months to complete. This new ASM clearly has muscle pain as a side effect so I intend to try minimising this with cannabis-based medication (CBM) through the proper channels i.e. a fully-registered private consultant who will be in contact with my GP. It will all be in my NHS notes, in other words.
Later in the year, once the efficacy and side effects of my new ASM are clear, I will apply for PIP. At this point I might look into using a different CBM with specific anti-seizure properties. This could allow me to take a lower dose of my NHS-prescribed ASM and therefore have less intense side effects, as well as continuing to treat pain. I would be doing this in consultation with my Neurology team and my GP but might elect not to do this, even if given the go-ahead by my medics.
Will using CBM prejudice my PIP claim, even if I furnish them with plenty of official paperwork explaining what I am doing and why? I’m concerned that I might be treated as if I’m only applying for PIP to fund a drug habit. Should I address this in my claim and make a point of refuting it, or would that just makes things worse?
Conversely, will they say that I can’t claim for problems with seizures and side effects if I’ve elected NOT to try to minimise them with anti-seizure CBM, since I’ve been given the go-ahead by medics and I’m clearly willing and able to do so for other reasons i.e. pain? My records could indicate that I’ve been told that different types of CBM are appropriate for different conditions yet I’ve deliberately chosen not explore my options fully in this regard.
Lastly, as regards the new NHS-prescribed ASM I’m definitely going to be using, if I’m claiming for seizures and side effects, will they ask why I’m not trying other ASM in case it improves my condition? Should I proactively address this?
I know the answers to all of this will be to provide paperwork paperwork paperwork, but my key question is this: Should I be very strategic about what conversations I have and don’t have with the CBM people and my GP, to keep my medical records simple and unequivocal?
Thanks so much for taking the time to read all this. I would be really grateful for any insights, advice and experiences you might want to share.
I already have muscle pain as a result of Chronic Fatigue Syndrome. I’m currently moving onto a new anti-seizure medication (ASM) for my epilepsy, a process which will take several months to complete. This new ASM clearly has muscle pain as a side effect so I intend to try minimising this with cannabis-based medication (CBM) through the proper channels i.e. a fully-registered private consultant who will be in contact with my GP. It will all be in my NHS notes, in other words.
Later in the year, once the efficacy and side effects of my new ASM are clear, I will apply for PIP. At this point I might look into using a different CBM with specific anti-seizure properties. This could allow me to take a lower dose of my NHS-prescribed ASM and therefore have less intense side effects, as well as continuing to treat pain. I would be doing this in consultation with my Neurology team and my GP but might elect not to do this, even if given the go-ahead by my medics.
Will using CBM prejudice my PIP claim, even if I furnish them with plenty of official paperwork explaining what I am doing and why? I’m concerned that I might be treated as if I’m only applying for PIP to fund a drug habit. Should I address this in my claim and make a point of refuting it, or would that just makes things worse?
Conversely, will they say that I can’t claim for problems with seizures and side effects if I’ve elected NOT to try to minimise them with anti-seizure CBM, since I’ve been given the go-ahead by medics and I’m clearly willing and able to do so for other reasons i.e. pain? My records could indicate that I’ve been told that different types of CBM are appropriate for different conditions yet I’ve deliberately chosen not explore my options fully in this regard.
Lastly, as regards the new NHS-prescribed ASM I’m definitely going to be using, if I’m claiming for seizures and side effects, will they ask why I’m not trying other ASM in case it improves my condition? Should I proactively address this?
I know the answers to all of this will be to provide paperwork paperwork paperwork, but my key question is this: Should I be very strategic about what conversations I have and don’t have with the CBM people and my GP, to keep my medical records simple and unequivocal?
Thanks so much for taking the time to read all this. I would be really grateful for any insights, advice and experiences you might want to share.
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- LL26
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1 week 23 hours ago #292671 by LL26
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by LL26 on topic Cannabis-Based Medication for pain and epilepsy
Hi Karen,
Firstly, it appears that your fullname is showing, if so you may wish to change your user name.
Of course there maybe some sort of stigma about using cannabis. However you have seen a consultant who has clearly recommended this.It is not illegal to use cannabis prescribed by a doctor. Since it is not readily available on the NHS a private consultation is required. Your GP is aware and I'm he would have queried the cannabis if he felt it was detrimental.
On this basis I think you maybe overthinking about the use of cannabis.
PIP is awarded if your health condition means that you struggle to perform a set list if activities called descriptors. Points are awarded according to your level of disability- 8 will provide the standard level and 12 or more will access the enhanced rate.
PIP is not awarded simply because you are diagnosed, you have to show that the illness limits how you perform the activities.
People with epilepsy often need supervision to stay safe, just in case they had a fit. Activities such as cooking, bathing as well as travelling in a journey would be the obvious ones that you could argue require supervision to stay safe. (Even if your fits are seldom, you can argue for supervision because having a fit whilst crossing the road or bathing etc could be very dangerous and lead to great harm.)
However yoy also have CFS which may mean yoy need physical help due to fatigue, possibly also because can not do or can not repeat the activity as many times as required throughout the day.
Pain, fatigue and eg breathlessness will all indicate a need for help and hence points (This is because it wouldn't reach the 'acceptable standard'.)
So....have a look at the Members guides if you haven't already, and think about the activities on each set and ar what level you are at. Remember thst when 2 or more activities in the same descriptor set apply equally the highest value points should be awarded.
When completing the form, you list the medicine you are on.
Include medicinal cannabis- give the exact name and dose. Note the consultant in the box provided. If there are side effects to the meds just say so.
Then using the guides you fill out each descriptor question eg
'I need supervision in order to cook and prepare food. This is because I have epilepsy. I have 3 fits on average each week but these are unpredictable.I need supervision to stay safe....'
Remember to include the effects of all health problems.
If you wish to, you can use the additional info space to explain thst you use medical cannabis to offset the effects of anti epileptic medicines in, but you do not need to.You might be asked at assessment about this, but just explain as you have done in the post. You are doing nothing wrong.
I hope this helps.
LL26
Firstly, it appears that your fullname is showing, if so you may wish to change your user name.
Of course there maybe some sort of stigma about using cannabis. However you have seen a consultant who has clearly recommended this.It is not illegal to use cannabis prescribed by a doctor. Since it is not readily available on the NHS a private consultation is required. Your GP is aware and I'm he would have queried the cannabis if he felt it was detrimental.
On this basis I think you maybe overthinking about the use of cannabis.
PIP is awarded if your health condition means that you struggle to perform a set list if activities called descriptors. Points are awarded according to your level of disability- 8 will provide the standard level and 12 or more will access the enhanced rate.
PIP is not awarded simply because you are diagnosed, you have to show that the illness limits how you perform the activities.
People with epilepsy often need supervision to stay safe, just in case they had a fit. Activities such as cooking, bathing as well as travelling in a journey would be the obvious ones that you could argue require supervision to stay safe. (Even if your fits are seldom, you can argue for supervision because having a fit whilst crossing the road or bathing etc could be very dangerous and lead to great harm.)
However yoy also have CFS which may mean yoy need physical help due to fatigue, possibly also because can not do or can not repeat the activity as many times as required throughout the day.
Pain, fatigue and eg breathlessness will all indicate a need for help and hence points (This is because it wouldn't reach the 'acceptable standard'.)
So....have a look at the Members guides if you haven't already, and think about the activities on each set and ar what level you are at. Remember thst when 2 or more activities in the same descriptor set apply equally the highest value points should be awarded.
When completing the form, you list the medicine you are on.
Include medicinal cannabis- give the exact name and dose. Note the consultant in the box provided. If there are side effects to the meds just say so.
Then using the guides you fill out each descriptor question eg
'I need supervision in order to cook and prepare food. This is because I have epilepsy. I have 3 fits on average each week but these are unpredictable.I need supervision to stay safe....'
Remember to include the effects of all health problems.
If you wish to, you can use the additional info space to explain thst you use medical cannabis to offset the effects of anti epileptic medicines in, but you do not need to.You might be asked at assessment about this, but just explain as you have done in the post. You are doing nothing wrong.
I hope this helps.
LL26
Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: Karen from Brighton
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- Karen from Brighton
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1 week 23 hours ago #292675 by Karen from Brighton
Replied by Karen from Brighton on topic Cannabis-Based Medication for pain and epilepsy
Thanks for that, all very useful, but I'm after advice on the specific issue of potentially refusing to take medicine that might help, whether it be controversial or not. Sorry, my message was overlong and I might not have made that clear.
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- Karen from Brighton
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1 week 22 hours ago #292676 by Karen from Brighton
Replied by Karen from Brighton on topic Cannabis-Based Medication for pain and epilepsy
Me again, with a far shortened version! What happens if a PIP claimant appears to have refused meds that might lessen the symptoms for which they are claiming? Thanks.
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- BIS
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1 week 20 hours ago #292682 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic Cannabis-Based Medication for pain and epilepsy
Hi Karen
LL26 mentioned in her post that your username could possibly be your real name. These posts can be seen anywhere on the internet - so if you have been using your own name - please change it. You can follow the instructions: "My full name is showing - how do I stop it." benefitsandwork.co.uk/guides-for-claimants/faq/forum
I think you're in danger of overthinking things. It's up to you how much you want to say about the specific medication you take on your PIP form. How much an assessor asks about your medication really varies. The most common question or comment about medication is the dosage people take. Often, assessors remark that a claimant is not taking a high enough dose, so their condition is not that serious. It's an ignorant remark, and they shouldn't make it.
It's impossible to anticipate how much knowledge your assessor will have of your condition and the specific medication suggested or prescribed. The more you tell them on the PIP form, the more you open yourself up to questions and possible misunderstandings. Going into a deep discussion about your medication isn't required on the form. Personally, I would just list my medication and leave it at that. I've helped many people with their PIP claims and only on a couple of occasions has the medication been queried.
The assessor is judging whether you meet the specific PIP criteria for the different activities, and the symptoms you experience from your epilepsy and CFS will have an impact on your answers, and that's where your focus should be. They don't know you or your medical history and would not be able to make a proper judgement that you would be much better off if you took a certain type of medication.
What you say to your GP or the CBM people is entirely up to you, but you have no control over what anyone records on your records or the language they use to record it - so you cannot guarantee that your records will remain "simple or unequivocal". The DWP rarely contact GPs about claimant records - but when they do - you have no control over what the GP tells them. The DWP send a form, and the GPs fill it in and send it off - and don't usually keep a record.
BIS
LL26 mentioned in her post that your username could possibly be your real name. These posts can be seen anywhere on the internet - so if you have been using your own name - please change it. You can follow the instructions: "My full name is showing - how do I stop it." benefitsandwork.co.uk/guides-for-claimants/faq/forum
I think you're in danger of overthinking things. It's up to you how much you want to say about the specific medication you take on your PIP form. How much an assessor asks about your medication really varies. The most common question or comment about medication is the dosage people take. Often, assessors remark that a claimant is not taking a high enough dose, so their condition is not that serious. It's an ignorant remark, and they shouldn't make it.
It's impossible to anticipate how much knowledge your assessor will have of your condition and the specific medication suggested or prescribed. The more you tell them on the PIP form, the more you open yourself up to questions and possible misunderstandings. Going into a deep discussion about your medication isn't required on the form. Personally, I would just list my medication and leave it at that. I've helped many people with their PIP claims and only on a couple of occasions has the medication been queried.
The assessor is judging whether you meet the specific PIP criteria for the different activities, and the symptoms you experience from your epilepsy and CFS will have an impact on your answers, and that's where your focus should be. They don't know you or your medical history and would not be able to make a proper judgement that you would be much better off if you took a certain type of medication.
What you say to your GP or the CBM people is entirely up to you, but you have no control over what anyone records on your records or the language they use to record it - so you cannot guarantee that your records will remain "simple or unequivocal". The DWP rarely contact GPs about claimant records - but when they do - you have no control over what the GP tells them. The DWP send a form, and the GPs fill it in and send it off - and don't usually keep a record.
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
The following user(s) said Thank You: Karen from Brighton
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