I’m thinking of taking the supplement hemp oil. wondered if anyone taking it and how they find it? what make etc?
Hemp oil can refer to a full-spectrum oil from the Cannabis sativa plant or hemp seed oil, which is oil that comes from just the seeds of the hemp plant. … THC is the compound that causes the so-called “high” of marijuana.
Hello KH. To answer your actual question, many people here on the forum use cbd oil and with varying degrees of success. In the past I have ordered the cbd paste from CBD Brothers. Google is your friend here as any link I might post will be removed by admin.
I entered CBD in the search box above and got lots of recent posts on here. This information lead me to try the purple paste. It is taken sublingually and held under the tongue for a couple of minutes. It tasted vile and, unfortunately for me, served no purpose.
However I am ready to try again and intend to order the oil. I know it’s available in the health stores and I’m not sure about the strenghts of the brands. Please do share anything you learn and your experience with it.
i know what it is , i wanted to know if anyone was/ has taking it
thanks for reply. im thinking of taking oil. been looking in to it. if i do will post how i get on. prob is there are different ones ,strengths how you take them and peoples bodies. not 1 fits all possibly even people with ms.
I tried CBD oil for months but it did nothing, the herbalist that was selling it to me at £60 per bottle, actually advised me to stop wasting my money and try to get Sativex instead, which after some discussion with my MS & spasticity consultants I managed to get the Sativex prescribed.
I’ve been trying the Sativex for around 8 months now, all at different doses sadly it does nothing but make feel sick & dizzy.
When I recently asked my MS nurse if anyone at the clinic had had any good responses from Sativex he said very very little !
I guess this sort of medication only works for some ?
And as KH says there are so many types and strengths of CBD oil on the market its an expensive game of trial & error trying to find something that might offer some relief !
i had a bottle of CBD oil that could be vaped.
it really worked for me.
alas i couldn’t remember where i got it from.
Hi Carol, In which way did it help ? Pain or stiffness ? Mobility ? Fatigue ? Jerking ? All the above ?
I found CBD brilliant; especially sleeping; I could sleep very deep like a baby. Cost about £30 from Holland and Barret.
Of course the strongest one supposedly legal is Sativex which is about 50 times stronger than CBD; IF YOU CAN GET IT.
Access to Sativex
Sativex is a cannabis-based medicine that is administered in the form of a mouth spray. The drug has recently been licensed by the Medicines and Healthcare products Regulatory Agency (MHRA) for the treatment of moderate to severe spasticity in people with MS in the UK. The drug is only licensed for people who have not responded adequately to other anti-spasticity medication and who demonstrate a clinically significant improvement in an initial trial of therapy.
Just under 50 per cent of people with MS who have not responded to other treatments can be expected to show a clinically significant response to Sativex after four weeks treatment, according to the most recent clinical trials.
Sativex has not been assessed by the National Institute for Health and Clinical Excellence (NICE). This means that decisions on whether to prescribe Sativex will be made at the local level.
Who can prescribe Sativex?
Sativex should only be prescribed under the supervision of a doctor experienced in the management of MS spasticity. In most cases this will be an MS specialist neurologist but may also include rehabilitation specialists or pain specialists who regularly treat MS spasticity. Sativex may also be prescribed by GPs on the instruction of the specialist.
The MS Society believes that people with MS should have access to proven treatments for their condition no matter where they live in the UK. However, not everyone with MS gets access to the right treatment at the right time, and in some cases people with MS are denied access altogether.
There are some MS drugs, like Sativex, that have been licensed and approved for use on the NHS but have not been approved by NICE. Without NICE approval, local health authorities have no legal obligation to provide you with access to the drug. Whilst there are fewer policies supporting your entitlement to MS drugs not approved by NICE, you can still (and should) make a case for access to these treatments.
Under the NHS Constitution, patients have the right to expect that local funding decisions of drugs and treatments not approved by NICE will be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment that you and your doctor feel would be right for you, the local NHS is obliged to explain that decision to you.
Making an individual request for Sativex
It may be the case that a local health authority (a primary care trust, for example) will take the decision not to prescribe Sativex on a routine basis. You should be able to find out what the local policy is on Sativex by completing the template letter (downloadable from this webpage) and sending it to your local health authority. If it is the case that the authority has decided not to prescribe Sativex routinely, an individual request for the drug will have to be made on your behalf if you want to access the treatment.
Individual requests for Sativex should be made by your specialist. The request should be accompanied by as much information as possible about why you and your healthcare professional think the treatment will be beneficial for you. It should be possible to assess whether Sativex is effective after a four week period of treatment. The health authority may therefore decide to provide Sativex for a preliminary four week period before making a decision about whether to fund the medicine long term.
Sometimes a request will only be considered for “exceptional circumstances” so you will be required to demonstrate “exceptionality” in your individual case. In these circumstances, it needs to be demonstrated that you are significantly different from the general population of patients with MS and that you are likely to gain significantly more benefit from the intervention than might normally be expected for patients with MS.
It will be very important to demonstrate that you have tried other spasticity medications that have not provided adequate symptom relief and/or have caused intolerable side effects. Highlighting the alternative treatment options available to you will also be necessary – if Sativex is not provided, intrathecal baclofen or botulinum toxin may be considered as options for treatment-resistant MS spasticity but are invasive and are associated with considerable costs to the NHS.
Lifestyle factors are also important here – for example, taking Sativex may allow you to be more independent, and lessen the need for a high level of care provision for certain daily tasks. If this is likely to be the case for you, this should be highlighted in your request for Sativex. This is just one example; many other factors could be taken into account. Sativex is not effective for everyone; this is why it is so important to show in your request why you and your healthcare professional think Sativex will be effective for you and how it will improve your quality of life to a greater extent than for the general population of people with MS.
How much does Sativex cost?
The cost to the NHS is £125 per 10ml vial. This works out on average at £11 per person per day, based on 8 sprays per day.
Who considers your request for Sativex?
Your request for Sativex will usually be considered by a panel, the name of which will depend on the internal structures that are in place in that particular health authority. Once the panel has considered the request, a letter will usually be sent to you and your doctor communicating the panel’s decision and their reasons for making this decision.
What should I do if my health authority refuses to provide Sativex?
Your health authority may refuse your request for Sativex. There are additional steps you can take at this stage to try to make the health authority review its decision. The paragraphs below explain what you can do in this situation.
How does the appeals system work?
If your request for Sativex is refused, you may wish to appeal the decision. It is a good idea to discuss this with your consultant or MS nurse before going ahead with the appeal. If you decide to make an appeal, you should take note of the following points:
Make sure you know how your health authority’s appeals process works. This will vary depending on where you live. Details of the process should be available on request from the health authority – the person who sent you the refusal letter should be able to help with this. The process might also be available from the health authority’s website.
Make sure that you appeal the decision within the specified number of days after receipt of the refusal letter otherwise the health authority has the right not to consider your appeal. The time limit should be stated clearly in the refusal letter. If no time limit is specified, it is advisable to check this with your health authority.
When you are invited by the appeal panel to submit written evidence in support of your case, your treating clinician will usually provide most of the evidence. However, there should be an opportunity for you to add to this with other information which you feel might be relevant to your case. Make sure you include as much information as possible about why you think Sativex will be beneficial for you.
If you are invited to make an oral representation to the panel to supplement a written statement, you should take up the opportunity if you feel it would strengthen your appeal. Equally though, you should not feel under any pressure to appear before the panel if you think this might cause you additional stress or anxiety. The panel may allow someone else to make the presentation on your behalf.
Health authorities vary in how often their appeals panels meet. For example, some meet once a month while others meet once a quarter. The panel will usually be a group of people who had no involvement in your original request for the drug.
The panel’s decision should be communicated to you in a letter shortly after the meeting to discuss your case. The panel is obliged to give you a clear explanation of how it reached its decision.
When going through the appeals process, remember to stay positive and to keep persevering. Good luck and don’t give up!
How to get loud
If your appeal for Sativex is refused, there are still ways in which you can challenge your health authority’s decision:
1. Involving the Policy and Campaigns team
If accessing Sativex is proving to be a problem in your area, we want to know about it, so please do get in touch. There may be grounds to start a local campaign in your area and we can help with putting the wheels in motion for this.
The MS Society has ﬁve area teams in England and relies on the regional service development ofﬁcers (SDOs) within these teams to inﬂuence local services for people with MS. The Society also has national ofﬁces in Scotland, Wales and Northern Ireland. We can put you in touch with your local SDO or national ofﬁce so that you have access to local support and expertise to help with your campaign.
You can also get in touch with us if you have any general enquiries relating to the information in this document. If you have reached the end of the appeals process and have been unsuccessful, we can advise you about the next steps to take. Please call 020 8438 0700 and ask for the Policy and Campaigns team or email us at email@example.com
2. Involving the local press
If you want to share your story with the press, you should ﬁrst consider the following:
In conversation with the Policy and Campaigns team, work out if you have a story the press will want to tell – and whether telling the press is really the best option. We can advise you on the best course of action, which may not always be to involve the media, and we will discuss your case with our Press Ofﬁce.
If you are comfortable with the idea and your story does merit media attention, the MS Society Press Ofﬁce will guide you through the process of contacting the local media, or can do this on your behalf.
You will have to give out personal details like your name and where you live. You should also be prepared to be photographed. If you are not comfortable with this, then sharing your story is not appropriate.
By telling your story in the local media, you will be helping to shine the light on a situation that may well be affecting many other people and you will hopefully help change things for the better.
3. Involving your local MP
Your local MP might be able to help with inﬂuencing your health authority to review its position on Sativex. You can ﬁnd out who your local MP is by entering your postcode on the parliament website here - http://ﬁndyourmp.parliament.uk/ - or by calling the House of Commons Information Ofﬁce on 020 7219 4272. You can use the template letter on page 7 to write to them about your case. Remember to keep your letter concise and to the point.
This simple guide summarises the steps you can take to try to access Sativex.
Step 1 – Ask your neurologist or MS nurse about whether they think Sativex might be beneficial for you.
Step 2 – Ask your neurologist or MS nurse about the process for accessing Sativex. This will vary depending on where you live.
Step 3 – If your neurologist or MS nurse is unable to help you to access Sativex due to restrictions put in place by the health authority but they think the treatment will be beneficial for you, complete the template letter on page 6 and send it to your PCT/NHS Board/Health Board.
Step 4 – Once you have established what the local NHS policy is on Sativex provision, you may have to consider making an individual funding request for Sativex.
Step 5 – If your individual request for funding is refused, you may wish to appeal the decision. Details of this process are above.
Step 6 – If you are still unable to access Sativex, we want to hear about it. Please email us at firstname.lastname@example.org or call 020 8438 0700 and ask for the Policy and Campaigns team.
Step 7 - You might also want to ‘get loud’ by involving your local MP or local press. If writing to your MP you can use the template letter on page 7.
Name of NHS Trust/Board chief executive
Address of Trust/Board
Dear Mr/Mrs_________insert name of Trust/Board chief executive,
I am writing as an MS patient who has recently been told that insert name of Board/Trust will not prescribe me a newly-licensed drug called Sativex.
Sativex is a cannabis-based oral spray that has just been licensed for the treatment of spasticity in people with MS. It helps alleviate symptoms of spasticity and is administered by spraying under the tongue.
Choose one of the two following paragraphs as applicable:
I have been using Sativex for the past (insert number) years/months on a named-patient basis. It has helped me by……………… (explain how it has specifically helped with symptom management). I need to carry on using this treatment to maintain my quality of life.
I suffer from spasticity and I would like to be granted access to Sativex as a licensed drug which may help alleviate my symptoms. Explain here why other treatments for spasticity have not worked for you.
I note that the NHS Constitution enshrines my right as a patient to have decisions on the funding of drugs to be made properly and after considering all the evidence. The Constitution states that patients “have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence.” It also states that “if the local NHS decides not to fund a drug or treatment you and your doctor feel would be right for you, they will explain that decision to you.”
Furthermore, a quality requirement of the National Service Framework for Long-term Conditions, which was published by the Department of Health in 2005, states that appropriate treatment should be “jointly agreed with individuals and begin as soon as possible” for people with long-term neurological conditions.
In light of these statements on the rights of patients with MS to access appropriate treatments, please could you send me a copy of your policy on prescribing Sativex. I would also like information on how I can submit a request for exceptional circumstances to be considered.
 Please note, the term ‘health authority’ is used throughout this document to refer to Primary Care Trust, NHS Board, Health Board, or NHS Trust, each of which is applicable in different parts of the UK.
Hi, I Use cbd oil?1,000mgs by cannabidol it really helps at night with pain and to help me sleep.
tried several brands and strengths, but none of them did anything for me at all.
then again, i dont have any pain, and as far as i know, its only really helpful for people that have pain.
After an on-line consultation with a Doctor with UKmeds.co.uk filling in a long list of questions. I was able to either order leaflabs CBD Oil Dropper250lg upto 1000mg or Vitality CBD Oral Spray 30ml/300mg/600mg/1200mg. Or Leaflabs CBD Capsule`s 300mg. Might be worth taking a look at. I take the Capsules it does help with pain, fatigue. Its not really cheap so I have breaks from it month taking then a month not. I do know of one guy who has RRMS who started the same time as me and did not benefit from it. Sooner we can ask for it from our GP the better. Keep Smyelin kielyn
Thats the impression I get.
It only seems to help with pain, or a bit of stiffness, but not to the point where it helps with mobility.
It seems UK Meds are a UK registered pharmacy, so I will look into raiding my piggy bank and trying it. Mainly , pain stiffness, and fatigue. Let you know how I get on (waste of money or not) jackD
we just have to try whatever we can afford and hope for the best.
i do know that the REAL stuff which is not legal works brilliantly but unfortunately the lad who used to give me some whenever i saw him is no longer living round here.
i trusted his home grown.
ah well i’ll have a pity party in my bed!!
may take a gin with me cos you have to take your own booze to parties!
The real mccoy is something I’d like to try