Not that it changes much. Having been reassured on the web seminar that hydroxy doesn't seem to pose any more of a risk at least I'll hopefully get a shopping slot within the next few months as I now join the back of the queue.
Does anyone know how often the big supermarkets get the information to say you are in receipt of a vulnerability letter?
That aside, has anyone used their local council to get additional help?
Take care all,
Mark
Hi Mark,
I actually had an offer of a priority pass from Asda three days BEFORE I got THE LETTER! Then, having placed a shopping order, it will be a wait of just over 2 weeks for it to be delivered. Very pleased!
I haven't asked my local council for help yet, but I am thinking about it as I can't find anybody who is willing to pick up my hydroxy tablets from the hospital and I run out in a matter of days. The hospital doesn't seem to have any measures in place for people who are shielding and can't find a volunteer who is willing to go to the hospital to pick up the tablets. They said that it is perfectly OK for me to go and pick them up myself! They obviously don't know their own guidelines! I can't believe that I am the only person with this problem. I wonder how others manage.
All The Best,
Caroline
The hospital are sending mine after I have my telephone check up!
Thanks for your reply, nivana. You are lucky. I have a phone consultation next Tuesday so will try my luck with the doctor. Unfortunately the haematologists at the hospital that I attend don't count ET as a blood cancer nor hydroxy as a chemotherapy drug, so, I expect, they think that I am making a fuss about nothing. (Not that I've been making a fuss, just asking politely. Perhaps that's where I've gone wrong!)
If they won't send them, I've recently heard, on the radio, of a charity who will help people obtain their medicine etc if they are on the at extreme risk register. They are called the Royal Voluntary Service and they give a number on their website to ring for help. So I'll try them if I get no joy on Tuesday.
All the Best.
Hope they sort it out for you - good luck and let us know what happens!
I spoke to a very nice doctor when I had my telephone consultation today. I explained that I have been told to shield so was unable to collect my hydroxy tablets and I couldn't find anybody to get them for me. She asked me if I drove but, seeing where the conversation was going and rather than explaining the shielding rules to her, I said that the clinical nurse had told me that it was possible to get the tablets sent to my local chemist to which she readily agreed! The only snag is, it will take about a week by which time I will only have 3 tablets left so let's hope it all goes to plan!
Thank you Caroline. So hope you are ok and have managed to get your medication.I have my consultation tomorrow by phone, so will let you know how things go !
Hi Doggy1903,
My phone consultation is tomorrow too.
I'm keeping my fingers crossed in the hope that they will either send my meds to me or my local chemist. A friendly neighbour has offered to pick them up from the chemist for me but, understandably, doesn't want to pick them up from the hospital.
Hope you get on OK too, tomorrow.
Hi Doggy 1903,
How did your consultation go today?
I am hopeful that I will get my medication delivered to my local chemist but still have my fingers crossed!
Please see my full reply to nivana above.
All the Best.
Thank you so much for asking. All went very well, platelets at 345,so on with the hydroxy which Ihave taken for 2 years now. Meds being delivered to the house today!An amazing service. So hope you are doing well.
Please let me know how you get on.
Gosh, that is an amazing service. Did you have to ask or did they offer to send the tablets to you?
My platelets, at 423, have been sitting on the high side of normal for quite a while and as I've had the odd symptom the doctor suggested that I increase my dose from 8 to 9 tablets per week. I have ET Jak 2+ which was diagnosed 3 years ago although, looking back at my records, I can see that my platelets started rising in 2008.
Hope your tablets arrived as planned today.
Thank you so much.Yes brilliant team here down in Worthing. Tabs arrived late afternoon.They kindly offered and there was no questions asked if i could attend myself.I have ET mpl positive,diagnosed about 2 years ago.11 tabs a week and this touchwood, seems to hold my bloods very steady. Next check up August.
How are you keeping, so hope your condition is not troubling you too much and you have a good medical team to help you.
ET MPL+ : you are a rare person! I hear quite a bit about JAK2 and CALR but hardly anything about MPL. There can't be many of you about.
I'm glad your tablets arrived on time. I haven't heard anything more about mine. The doctor was rather vague about how I would know when they are ready to collect from the chemist: "I expect they will phone you. If you haven't heard from them by Monday give them a call"
So it's still a bit of a worry, as I'll only have 3 tablets left by then.
I am usually fine but during the recent hot weather I had some symptoms that I connect with my MPN; feeling dizzy, ice cold finger tip, burning hot feet and a disturbance to my sight in one eye , occurring intermittently over a couple of weeks. I think perhaps I had become dehydrated and my blood was more sluggish than normal. It was mentioning these symptoms to the doctor on Tuesday which prompted her to suggest an extra hydroxy tablet each week, which takes me up to 9. They sometimes make me feel nauseous so the fewer I have to take the better!
Hope you enjoy the next two warm days by the sea before the temperature plunges!
Thank you for your kindness, so hope tablets will arrive promptly.It does seem very dependent on where we live.I am always interested to note the slightly different treatments offered as well around the country.
Wishing you a good week ahead. Keep in contact.
Thank you for remembering. I've not long been back from the chemists. The prescription arrived by post this afternoon. The doctor had sent the prescription to me rather than the chemist so I had to take it there this afternoon. To my surprise they had some hydroxy in stock so I only had to spend over an hour and a quarter waiting outside in a mini gale to be handed a packet for one months supply instead of six months worth! Luckily it only took them about 10 minutes to put it right by which time I was frozen! I hadn't reckoned on it taking so long or else I would have put a few more layers on.
Thank goodness I went myself (against shielding rules) and didn't ask a neighbour. I would have felt dreadful taking up so much of their time only for them to bring back the wrong amount of tablets.
Still, all's well that ends well and I am now set up for the next six months by which time I hope things are more back to normal.
Just got two weeks of hoping I haven't caught anything!
You may need to ring them and get them to add you to their list.
I've had a nightmare getting my usual delivery service even though ive shopped online for years.
They told me I was on a list and then I found I wasn't. I got angry and ranted that they had lied. Did the trick. They rang me ..got me on their list. However it's not what I expected or wanted. I hate confrontation. I was just fed up we've got enough going on.
If it helps I found Morrison's easy to get a delivery slot from ..then Asda and Tesco. Sainsburys I've heard are ok. Other areas have Waitrose ..or even local small shops may be an even better idea.
Good luck..
Contact your council & also complete the registration on the government website gov.uk/coronavirus-extremel...
You should be on the lists but this definitely seems to help with getting regular delivery slots.
If you are on FB see if you can find a local community group that are helping. We have a group that provide free food usually (bit like a food bank but you've never needed a referral) they are delivering the food they get donated by the supermarkets to those who are vulnerable.
There is also a group in the town I work in, volunteer led & they are shopping, collecting prescriptions, doing people's gardening etc.... for those who are vulnerable.
Once a week as well, they are providing a free hot meal to those who are at need, vulnerable, elderly, all delivered to the persons door by a team of volunteers. Its been going 3 weeks & initially was 70 meals this week was 156 meals. Next week it's 2 meals as the local chippy which is shut during lockdown, is doing a free fish supper for VE day. Local farmers, businesses & the community have all pulled together to ensure this can happen. I think there is a lot of similar things happening in a lot of towns so see of you can find something because its not just the supermarkets which are helping. Our butchers are delivering to the vulnerable as are the smaller shops. In fact nearly every shop round here is delivering now, including the bakery & the farm shop, all very reasonably priced too. Best place is to check out there FB pages, hopefully there is many places for support local to you. Stay safe x
Hi
You can ring Sainsbury’s to register as vulnerable and then they complete access within 48 hours - I then got a slot 2 days later and you get one slot once a week. I wouldn’t wait for them to contact you as Morrison’s for example even though been an online customer have not contacted me direct to set up and when I try to get slots it’s impossible! My gp also said you can use NHS volunteers to pick up shopping for you etc and that gp/council can give you numbers to help
Thank you
Hi Mark - call Sainsbury’s on 0800 052 5500 and get them to put you on their vulnerable list. I managed to get through quickly and they’re very helpful.
Takes about 48 hours for their website to update but then you should be able to view slot availability. It’s still a bit hit and miss but if I keep looking I can generally find a slot a week.
Hi All,
Many thanks for all the replies.
I'm going to contact the council and Sainsbury's so hopefully I'll get a slot very soon.
Many thanks
Mark
Hi Mark.
Just call the supermarket. I called Tesco and I wasn't on their list but they gave me priority shop anyway. You need to book a slot as soon after midnight as possible, then do the shop at a more reasonable time.
Hope that helps.
Josh
Letter from guys.... 
Extremely Vulnerable letter
Critical illness claim - finally got an answer
Has anybody got a baseball bat?
Letter from Government/GP???
