"Preventing LDN liquid on NHS prescription to existing patients"

About: NHS Bury CCG NHS Lanarkshire

(as the patient),

Naltrexone is used in the treatment of drug and alcohol addiction. When used in lower doses of approximately one-tenth of those used for drug/alcohol rehabilitation purposes, Low Dose Naltrexone (LDN) is used as an "off-label" treatment for a long list of immunologically-related disorders; including MS. LDN is currently being used to treat 174+ auto immune conditions ranging from cancer and MS to Fibromyalgia/CFS/ME to Crohn’s and HIV/AIDS.

My Story: I was diagnosed with MS 18 years ago. Due to frequent relapses, increasing disability and extreme fatigue I was retired from work on medical grounds and I have been reliant on state benefits and the NHS to live ever since. I have had good GPs and not so good neurologists. GPs are at the front line in helping me manage my illness (if we got frequent flyer points for the use of GP services and medication from the NHS I would be a platinum plus member, such is my quality of life dependency on both). In 2013 I had a bad relapse and during my recovery I met someone who told me about LDN. I looked it up on line, did my own research and then took the information I had found to my GP.

"As naltrexone is a licensed drug in the UK, it can be prescribed for conditions

other than that for which it is licensed if a doctor feels that it is an appropriate

treatment. Drugs prescribed 'off licence' are the direct responsibility of the

prescribing doctor, who will need to be convinced that the treatment is safe

and potentially effective. Although LDN is relatively inexpensive, funding for

off licence prescriptions may or may not be accepted by the local primary care

trust. "http: //www. nhs. uk

My GP was happy to prescribe LDN for me and so I began to get NHS prescriptions for the liquid form from the only UK pharmacy that supplies it, the pharmacy is in the Glasgow area. A month's supply of LDN in liquid form costs £18. 50 a month, in capsule form it costs £39. 99. So I got the cheaper way of prescribing it; the liquid.

All has gone really well since I began taking LDN. My disabilities began to diminish, my mood, energy levels and general health improved dramatically over the course of the first six months. Muscle spams, hand tremors, neuropathy and my over all fitness and mood improved to such an extent that I was for the first time in 15 years able to seriously consider a return to work, a life off benefits and a fresh start.

The only UK pharmacy that dispenses LDN is based in Glasgow. They have been dispensing it for all NHS patients in the UK for several years.

However, in July 2014 when my last prescription of LDN arrived I also received a letter from the pharmacy informing me that they were no longer able to supply me with LDN in liquid form on the NHS because they had been moved into a new NHS Trust zone, that of Lanarkshire NHS Trust, who would not permit them to supply LDN in liquid form to non-Lanarkshire NHS Trust patients.

I have been told that Lanarkshire NHS Trust will still allow LDN to be dispensed on the NHS to non Lanarkshire NHS Trust residents but that they will only permit it in the capsule form at a cost of £39. 99 a month. They have stopped the dispensing of the cheaper liquid form to NHS patients OUTSIDE of Lanarkshire NHS Trust, yet the liquid form can still be dispensed on the NHS to patients IN Lanarkshire NHS Trust. This makes no sense at all.

Why have Lanarkshire NHS Trust stopped the availability of the cheaper liquid solution to all non-Lanarkshire NHS Trust patients but still allow it to be dispensed in liquid form for patients who live in their Trust area? If there is a problem with the liquid form then it should be stopped for everyone, clearly there is not a problem with the liquid form if it's still being allowed for patients in Lanarkshire, so why has the liquid form been stopped for patients outside Lanarkshire? There is no logic, financial or otherwise to this decision.

My own NHS Trust (in England) will not pay for me to have LDN capsules, as they cost £40 per month as opposed to £18. 50 a month for the same medication in liquid form. My GP can prescribe me LDN on private prescription but the GP practice's policy is that I also have to pay for the cost of a private prescription. I cannot afford the cost of this; I am stuck on the ever shrinking value of state benefits and

I can't pay for the LDN on private prescription.

I have now been forced to stop taking LDN because of what I think is Lanarkshire NHS Trust's hypocritical and illogical decision.

I have been without LDN for a month now and my old everyday symptoms have begun to return which means that I am no longer able to consider returning to work. I also have to go back onto other medications that previous to my taking LDN had been 'controlling' my MS symptoms. All the old medication that I had managed to stop taking since introducing LDN has now come back into my life and the cost of this medication is back on the NHS – the cost of which is more than a one month supply of liquid LDN! The NHS pays for this increase in cost and the 'standard medication' is nowhere near as effective on me as the LDN has been.

Lanarkshire NHS Trust have made a decision without explaining to me one of the patients who have been receiving LDN in liquid form why they have done this.

If Lanarkshire NHS Trust was actually paying for the cost of the LDN for patients from outside of their Trust's area then they would have stopped the more expensive capsule form of LDN and only allowed the liquid as it is half the price of the capsules. But they don’t pay for any of this, my own NHS Trust pays for my LDN liquid, not Lanarkshire, so why have they stopped me receiving it when they will still pay for it for patients in their own NHS Trust?

Why have Lanarkshire NHS Trust made the decision to stop LDN in liquid form being to NHS patients dispensed outside of their area?

When was this decision made? Lanarkshire NHS Trust should have provided the pharmacy concerned with a letter for all their LDN patients so that we knew what was going on. They didn’t have the decency to do this. I only found out about this decision with my last delivery of LDN and that was literally the last delivery.

This decision has ignored the impact that ceasing the supply of LDN liquid will have on other UK NHS LDN liquid users.

My life had changed and was changing for the better because of my taking LDN. My taking it had reduced the need for me to have other medication and treatments on the NHS. Now all that is undone. I feel that Lanarkshire NHS Trust have stolen the only hope that I have had in years for a better life, improved health and the chance to escape the 'benefit trap' that so many chronically ill people are reliant upon but do not want.

I would like Lanarkshire NHS Trust to meet with all NHS LDN liquid users and tell us who made this decision; based on what reasoning and why they didn't have a period of consultation with the pharmacy that supplies it and the patients that use it, so that we had an opportunity to voice our concerns BEFORE they stopped it without giving us any warning.

Principles and values that guide the NHS include the fact that it be based on clinical need, not ability to pay. My inability to pay for medication that is available on the NHS, IF it is reasonably priced has now been denied me by Lanarkshire NHS Trust and no reason has been provided directly to me for this. As a I was an existing patient of the pharmacy that provides LDN in liquid form before the pharmacy was moved into Lanarkshire NHS Trust I believe that I have a right to continue receiving LDN on the NHS in liquid form and that I also have a right to know why Lanarkshire NHS Trust made the decision to stop me from receiving without giving me direct warning of their intention to do this. If they given a few months notice to existing patients that I would have appealed to them to reconsider this action because of the enormous negative impact that it will have and is now having on my life and the wider impact that it will have on the NHS due to higher costs being charged back to the NHS because they have stopped me accessing an effective, cheaper medication.

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Response from Rick Edwards, Patient Information & Experience Manager, Patient Affairs, NHS Lanarkshire

picture of Rick Edwards

Dear LuciaM,

Thank you for getting in touch. I’m pleased that you have managed to find a medicine that has helped you to cope with your condition.

As you point out, NHS Lanarkshire has decided that low dose naltrexone should be available to Scottish residents from Lanarkshire pharmacies but NHS Lanarkshire is unable to support the costs for this medicine for non Scottish residents. Costs for other Scottish residents will be recovered from the relevant Health Board; we are unable to recover associated costs from NHS Trusts outwith Scotland.

I’m sorry for the distress and inconvenience this has caused you. Our responsibility for patient care was high in our priorities when this decision was made and the change has been introduced over a period of time to allow regular users of this medicine to make alternative arrangements to get it.

This medicine should be available from many pharmacies. If you contact some of the pharmacies in your local area, as well as your GP and local NHS Trust you should be able to make alternative arrangements.

I wish you well for the future.

Kind regards

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