May 2021
The Walton Centre
12/05/21 11:32
Had my appointment call with an MS Nurse from the Walton Centre yesterday. This was a follow up/introduction call in the wake of the MS Neurologist appointment (Dr. Mills). The Walton Centre covers an area from Preston down to North Wales so I’m lucky to be only 1 mile from the Centre (if and when any actual visits are allowed rather than telephone or video calls). The four specialist MS Nurses at the centre cover 5000 patients.
As well as introducing herself and the team the telephone appointment comprised discussing where I was up to in terms of the relapse and broadly probing the extent of my knowledge of MS and clarifying things. She outlined how things will progress going forward with the Walton Centre who will be the specialists dealing with me. My GP is there for everything else, but for anything MS related the point of contact is the MS Nurse Advice Line at the centre. If there are any relapses I basically don’t bother my GP with things I’d call the Advice Line and a nurse will call back in 48 hours or so. The reason for the ‘wait’ is that generally nothing that changes should tend to be urgent, it’s all about changes and progression of the MS. There is also an emergency clinic at the centre if something occurs that requires investigating including anything that may induce a change in treatment. The GP will be copied in with any correspondence but will not be dealing with it.
We talked a fair bit about the medicinal side and Disease Modifying Treatments (DMT)–and obviously Copaxone in particular. According to NICE the entitlement for MS treatment is if the patient has had ‘at least two relapses in two years’: and I’ve had two in three months so will be put on treatment. The drugs get issued by the Walton Centre directly and not through a GP/prescription. They’ll get delivered to my home from a private courier so I need to be in for deliveries etc. I will also have a home visit from a nurse for the first injection to go through the injection process. The paperwork to arrange the drug will take a while, but I should be getting the drugs within two or three weeks. Exciting stuff, eh?
I understand that the injection device will be an ‘auto-inject’ pen like the ones people with diabetes use. The drug needs to be refrigerated, but it is recommended to take the drug out of the fridge a day before use i.e. not to inject straight from the fridge. The Copaxone will get delivered in one month batches in case there is any issue with the MS or any adverse reactions: if they delivered any more and in the meantime I was changed onto another drug then the stuff they’d delivered would be wasted. Makes sense. It can take around six months for the drug to get to the level it should so early relapses whilst on it won’t mean the drug isn’t working.
An MS Nurse will contact me in around six months, which I think will then continue ad infinitum whilst there are no changes to deal with. The Advice Line will be the main point of contact and allow them to keep track of things.
Usually after diagnosis the patients are invited to the Walton Centre to see the place, meet the Doctors & Nurses and be told about MS. Due to Covid restrictions these haven’t been happening for the last year. To date I’ve only met the neurologist at the time he gave me the diagnosis in the hospital after the brain and spine MRIs and I’ve not met the MS Nurses. I’ve spoken to a couple of the nurses now who have both been great and had a good video call with Dr Mills. In terms of MS I’ve been provided good information verbally and with literature and links several websites.
In summary, things are progressing well with the nurses, doctor and treatment advice and I’m more than happy with all that the Walton Centre has done for me so far–even without having gone there (other than for the infamous Lumbar Puncture).
Onwards and Upwards.
As well as introducing herself and the team the telephone appointment comprised discussing where I was up to in terms of the relapse and broadly probing the extent of my knowledge of MS and clarifying things. She outlined how things will progress going forward with the Walton Centre who will be the specialists dealing with me. My GP is there for everything else, but for anything MS related the point of contact is the MS Nurse Advice Line at the centre. If there are any relapses I basically don’t bother my GP with things I’d call the Advice Line and a nurse will call back in 48 hours or so. The reason for the ‘wait’ is that generally nothing that changes should tend to be urgent, it’s all about changes and progression of the MS. There is also an emergency clinic at the centre if something occurs that requires investigating including anything that may induce a change in treatment. The GP will be copied in with any correspondence but will not be dealing with it.
We talked a fair bit about the medicinal side and Disease Modifying Treatments (DMT)–and obviously Copaxone in particular. According to NICE the entitlement for MS treatment is if the patient has had ‘at least two relapses in two years’: and I’ve had two in three months so will be put on treatment. The drugs get issued by the Walton Centre directly and not through a GP/prescription. They’ll get delivered to my home from a private courier so I need to be in for deliveries etc. I will also have a home visit from a nurse for the first injection to go through the injection process. The paperwork to arrange the drug will take a while, but I should be getting the drugs within two or three weeks. Exciting stuff, eh?
I understand that the injection device will be an ‘auto-inject’ pen like the ones people with diabetes use. The drug needs to be refrigerated, but it is recommended to take the drug out of the fridge a day before use i.e. not to inject straight from the fridge. The Copaxone will get delivered in one month batches in case there is any issue with the MS or any adverse reactions: if they delivered any more and in the meantime I was changed onto another drug then the stuff they’d delivered would be wasted. Makes sense. It can take around six months for the drug to get to the level it should so early relapses whilst on it won’t mean the drug isn’t working.
An MS Nurse will contact me in around six months, which I think will then continue ad infinitum whilst there are no changes to deal with. The Advice Line will be the main point of contact and allow them to keep track of things.
Usually after diagnosis the patients are invited to the Walton Centre to see the place, meet the Doctors & Nurses and be told about MS. Due to Covid restrictions these haven’t been happening for the last year. To date I’ve only met the neurologist at the time he gave me the diagnosis in the hospital after the brain and spine MRIs and I’ve not met the MS Nurses. I’ve spoken to a couple of the nurses now who have both been great and had a good video call with Dr Mills. In terms of MS I’ve been provided good information verbally and with literature and links several websites.
In summary, things are progressing well with the nurses, doctor and treatment advice and I’m more than happy with all that the Walton Centre has done for me so far–even without having gone there (other than for the infamous Lumbar Puncture).
Onwards and Upwards.
Comments
Copaxone
05/05/21 12:44
Not on the drugs yet. I suppose there’s no immediate rush but it would be good to get started and run with it. Literally perhaps.
Yesterday I received some information on MS including a pamphlet on Copaxone (glatiramer acetate) which will be my first MS drug. Many people end up on one drug for some time (often years) before changing to another and another. I dare say that is likely to happen to me too. Besides, the advances with MS seem to be happening quite regularly. It could be one tablet that tastes of strawberries and cream by the end of the decade. Possibly.
I’m not looking forward to the injection part of it. It would be very strange if I was. The recommendation is to rotate the injection points through up to seven different parts of the body. These are: the belly, the upper thighs, the back of the arms and the upper hips. Repeated injections in the same place should be avoided for at least seven days. The pamphlet says that for the upper arms - and I dare say the hips - it would be best to do it with someone else there. Which is all well and good if you don’t live alone. Anyway with only an injection three times a week I guess I can just stick with the belly and the thighs. I can’t miss any of them.
Injection areas (not sure why the figure is about to draw a couple of revolvers)
Not yet sure how the ‘three times a week’ thing works. Every two days with a day off? Or is it every two days so that it’s three times a week the first week and then four times a week? I guess when I speak to the nurse next week (yep, another call) I’ll learn all that.
I can’t start taking Copaxone until a) it’s actually prescribed for me and b) a nurse shows me physically how to do the injections. That is not going to be a fun appointment is it?
Onwards and upwards.
Yesterday I received some information on MS including a pamphlet on Copaxone (glatiramer acetate) which will be my first MS drug. Many people end up on one drug for some time (often years) before changing to another and another. I dare say that is likely to happen to me too. Besides, the advances with MS seem to be happening quite regularly. It could be one tablet that tastes of strawberries and cream by the end of the decade. Possibly.
I’m not looking forward to the injection part of it. It would be very strange if I was. The recommendation is to rotate the injection points through up to seven different parts of the body. These are: the belly, the upper thighs, the back of the arms and the upper hips. Repeated injections in the same place should be avoided for at least seven days. The pamphlet says that for the upper arms - and I dare say the hips - it would be best to do it with someone else there. Which is all well and good if you don’t live alone. Anyway with only an injection three times a week I guess I can just stick with the belly and the thighs. I can’t miss any of them.
Injection areas (not sure why the figure is about to draw a couple of revolvers)
Not yet sure how the ‘three times a week’ thing works. Every two days with a day off? Or is it every two days so that it’s three times a week the first week and then four times a week? I guess when I speak to the nurse next week (yep, another call) I’ll learn all that.
I can’t start taking Copaxone until a) it’s actually prescribed for me and b) a nurse shows me physically how to do the injections. That is not going to be a fun appointment is it?
Onwards and upwards.