Apparently, there are 3,000 people diagnosed with MDS in the UK yearly. My concern is that many people feel totally alone, as they are unaware that the MDS UK Patient Support Group exists.
Following my husband's diagnosis at a local hospital, I scoured the internet for information and fortunately came across this website. I had already scared myself senseless looking at the other material on the web,so it was comforting to find positive advice on the forum, especially regarding info on the Centres of Excellence and a forthcoming Patient Day in London.
Perhaps our experience, is not typical, but in an attempt to help to raise awareness, I have offered to collate feedback for the Commitee.
Please would you be kind enough to leave comments as to how you discovered the Support Group/ website.
- Own research
- Posters/contact card
- Consultant/specialist nurse at your clinic
- Newsletter
- Facebook
- Other
David Bayliss (driver of MINI 2 the ARCTIC) has now taken over as Webmaster, so any suggestions for information that would be useful or improvements to the web or forum would be great. Hopefully, greater awareness will ensure more activity on the forum.
Chris, kindly drew my attention to the online webcasts on various topics, perhaps we could add some from UK consultants or a slot on U Tube.
Please take the time to reply so we can hopefully increase awareness
Many thanks.
PLEASE CAN YOU HELP
Moderator: Steering Committee
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Bronte
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chris
- Posts: 755
- Joined: 01 Dec 2009 21:52
- Location: Essex
- Contact:
Re: PLEASE CAN YOU HELP
Hi Bronte
Hope all well with you and your husband?
Like you, I found this website through own research and not until, like you, I had scared myself witless!! I think it was from a link on patient.co.uk.
I think something like the tutorial on the AA MDS website would be very helpful for basic information about MDS or maybe it would be possible to video the expert speaker's session at one of the patient forum meetings? e.g. Dr Chris Dalley's presentation at the forum in London last year was very clear.
As regards the webmaster role which David has taken on, not sure if this is possible technically but the posts do tend to get a bit mixed up under various headings and I wondered if there could be an index which identified key words and which could take you via a click to all the references? Key words might be
- types of MDS
- experiences of treatments
- stem cell transplant experiences
- everyday living with MDS
etc
Hope you get a good response. I agree we certainly do need to engage medical teams to disseminate the information on diagnosis of MDS as this would save an awful lot of worry and fear.
Best wishes
Chris
Hope all well with you and your husband?
Like you, I found this website through own research and not until, like you, I had scared myself witless!! I think it was from a link on patient.co.uk.
I think something like the tutorial on the AA MDS website would be very helpful for basic information about MDS or maybe it would be possible to video the expert speaker's session at one of the patient forum meetings? e.g. Dr Chris Dalley's presentation at the forum in London last year was very clear.
As regards the webmaster role which David has taken on, not sure if this is possible technically but the posts do tend to get a bit mixed up under various headings and I wondered if there could be an index which identified key words and which could take you via a click to all the references? Key words might be
- types of MDS
- experiences of treatments
- stem cell transplant experiences
- everyday living with MDS
etc
Hope you get a good response. I agree we certainly do need to engage medical teams to disseminate the information on diagnosis of MDS as this would save an awful lot of worry and fear.
Best wishes
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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janetstanford
- Posts: 335
- Joined: 01 Nov 2010 17:54
- Contact:
Re: PLEASE CAN YOU HELP
Hello Bronte
i fell ill in may 2008 ... for the next year or so blood transfusions came second to the main illness... then panic and fright set in when i was told the transfusions would continue and it may end in a transplant !!! ...i was scared and alone ...
being an avid reader of the daily mail in march 2009 i read by chance an article about rodney taylor ..it was shocking and eye opening ...so similar to me at last i could relate to another person.. i had not up to that point heard of mds (it was never mentioned by any of the hospital staff ) over the next year i did re-read the article many times but concentrated on recovery from the main illness.. then i started to google first by taking my blood results ect and putting words into google.. i found myself walking through a maze one in which i felt stupid frustrated depressed..!! my understanding of the medical terms limited.. (google has cured me of this )....
finally i joined the web site and with help of sophie and info she sent to me off i went to my clinic app...oops this did not go well verbally he was quite hostile...even though he had the previous year attended a seminar in florida .... others on the site have had this problem i believe most do not admit mds is real ?????
i also believe that info needs to reach the people at ground level ..in those hospitals that are not termed as "excellent" posters ect remind the staff of mds ...work in partnership with macmillan for example thier books are so easy to understand ....
sorry had a rant i will stop now ...i still have that article can not bear to throw it away i still read it ...why no idea..just glad i came across it ...
good luck in your task hope lots of members help you as it will i am sure benefit us all
take care janet
i fell ill in may 2008 ... for the next year or so blood transfusions came second to the main illness... then panic and fright set in when i was told the transfusions would continue and it may end in a transplant !!! ...i was scared and alone ...
being an avid reader of the daily mail in march 2009 i read by chance an article about rodney taylor ..it was shocking and eye opening ...so similar to me at last i could relate to another person.. i had not up to that point heard of mds (it was never mentioned by any of the hospital staff ) over the next year i did re-read the article many times but concentrated on recovery from the main illness.. then i started to google first by taking my blood results ect and putting words into google.. i found myself walking through a maze one in which i felt stupid frustrated depressed..!! my understanding of the medical terms limited.. (google has cured me of this )....
finally i joined the web site and with help of sophie and info she sent to me off i went to my clinic app...oops this did not go well verbally he was quite hostile...even though he had the previous year attended a seminar in florida .... others on the site have had this problem i believe most do not admit mds is real ?????
i also believe that info needs to reach the people at ground level ..in those hospitals that are not termed as "excellent" posters ect remind the staff of mds ...work in partnership with macmillan for example thier books are so easy to understand ....
sorry had a rant i will stop now ...i still have that article can not bear to throw it away i still read it ...why no idea..just glad i came across it ...
good luck in your task hope lots of members help you as it will i am sure benefit us all
take care janet
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Bronte
Re: PLEASE CAN YOU HELP
Dear Chris and Janet,
Thank you for your swift replies.
I am convinced that sometimes the lack of replies on the forum, relate not to technophobia, but more realistically due to the fact that people are unaware of this site. That's why, I will be interested to see if anyone responds by saying that they were directly signposted via a poster or contact card to the Support Group. If not, then in my opinion, we need to create some basic marketing material to ensure that this happens. Then hopefully, more people will be encouraged to use the forum and to realise that they are NOT ALONE.
Chris, I agree about the topics on the forum (have a look on the Parkinsons UK site and see what you think, about their forum section only) Is this on the right lines ?
Janet, I agree Rodney's article was excellent, I kept it as well.
I hope that someone, is prepared to talk to the journalist about MDS, to raise public awareness.
Thank you for your swift replies.
I am convinced that sometimes the lack of replies on the forum, relate not to technophobia, but more realistically due to the fact that people are unaware of this site. That's why, I will be interested to see if anyone responds by saying that they were directly signposted via a poster or contact card to the Support Group. If not, then in my opinion, we need to create some basic marketing material to ensure that this happens. Then hopefully, more people will be encouraged to use the forum and to realise that they are NOT ALONE.
Chris, I agree about the topics on the forum (have a look on the Parkinsons UK site and see what you think, about their forum section only) Is this on the right lines ?
Janet, I agree Rodney's article was excellent, I kept it as well.
I hope that someone, is prepared to talk to the journalist about MDS, to raise public awareness.
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chris
- Posts: 755
- Joined: 01 Dec 2009 21:52
- Location: Essex
- Contact:
Re: PLEASE CAN YOU HELP
Dear Bronte
Just had a look at the Parkinson's UK Forum. Excellent and very well-used, judging by the sheer volume of recent posts - though we mustn't forget that this may be mainly down to sheer weight of numbers of people who have contracted Parkinsons. I thought the search facility and the headings were excellent as a way of finding your way around. Also the "latest activity" heading. Don't know how complex all that would be from an IT point of view and it does need to be user-friendly. If there's too much going on it can be off-putting as there is so much to read!!!
I think the factors leading to the low forum usage are, firstly, lack of awareness of what support is available for MDS and this supports your ideas for more marketing materials being available in hospital waiting rooms/ given out by medical staff; and, secondly, that the demographic of the disease may be predominantly older people, some of whom are not confident with IT and indeed suspicious of / have a natural reluctance about revealing personal information over the net. And, in many ways I can understand this. Many of the US sites are overly-sentimental and frankly I find some of the personal revelations a bit "yucky" and in the realms of "too much information"! I think it's about letting people see that there are other sufferers who feel as they do so that they do not feel totally isolated. I think the forum should be a springboard to point people to reliable sources of info (e.g. something like the excellent Macmillan leaflets as Janet says) and possibly to set up more personal and meaningful support networks such as regional meetings etc.
We are always going to be "thin on the ground" and I also hope somebody feels brave enough to speak to the journalist and raise awareness from an article in a popular magazine that hopefully an MDS patient will come across as Janet did.
Good luck withy the survey.
Chris
Just had a look at the Parkinson's UK Forum. Excellent and very well-used, judging by the sheer volume of recent posts - though we mustn't forget that this may be mainly down to sheer weight of numbers of people who have contracted Parkinsons. I thought the search facility and the headings were excellent as a way of finding your way around. Also the "latest activity" heading. Don't know how complex all that would be from an IT point of view and it does need to be user-friendly. If there's too much going on it can be off-putting as there is so much to read!!!
I think the factors leading to the low forum usage are, firstly, lack of awareness of what support is available for MDS and this supports your ideas for more marketing materials being available in hospital waiting rooms/ given out by medical staff; and, secondly, that the demographic of the disease may be predominantly older people, some of whom are not confident with IT and indeed suspicious of / have a natural reluctance about revealing personal information over the net. And, in many ways I can understand this. Many of the US sites are overly-sentimental and frankly I find some of the personal revelations a bit "yucky" and in the realms of "too much information"! I think it's about letting people see that there are other sufferers who feel as they do so that they do not feel totally isolated. I think the forum should be a springboard to point people to reliable sources of info (e.g. something like the excellent Macmillan leaflets as Janet says) and possibly to set up more personal and meaningful support networks such as regional meetings etc.
We are always going to be "thin on the ground" and I also hope somebody feels brave enough to speak to the journalist and raise awareness from an article in a popular magazine that hopefully an MDS patient will come across as Janet did.
Good luck withy the survey.
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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janetstanford
- Posts: 335
- Joined: 01 Nov 2010 17:54
- Contact:
Re: PLEASE CAN YOU HELP
Hi chris
yes i do agree mds seems to be seen as age related..although i was 49 and there are others on the site from 41yrs of age ...i did once have a conversation with a nurse specialist who informed me that there had been an increase in"age related illness" in people 10,15 and 20 yrs younger than the expected no cause had been found but lifestyle was considered.......
i agree with marketing getting the info out there...working in partnership with others... because as we know you are either unlucky in the gentic lottery or have an illness which could be the cause..........
i also believe when you are ill you live from clinic to clinic appointment...you have such a short time with the doctor ...to some extent they are too busy to point you in a direction ..but so many people now are living longer with the after effects of mayor illness such as cancer , macmillan over the last couple of years have been pushing this issue for help and support .....
i believe the site should be more informative/interactive..last year i completed a 6 week online forum with macmillan in partnership with standford uni ...this was so good helped so much
bronte maybe you could investigate this it may give you some ideas...
chris regional meetings i agree totaly with this ....do you think as i am an only an hour away from york they would let me go to theirs ....think i will ask ....
all take care
janet
yes i do agree mds seems to be seen as age related..although i was 49 and there are others on the site from 41yrs of age ...i did once have a conversation with a nurse specialist who informed me that there had been an increase in"age related illness" in people 10,15 and 20 yrs younger than the expected no cause had been found but lifestyle was considered.......
i agree with marketing getting the info out there...working in partnership with others... because as we know you are either unlucky in the gentic lottery or have an illness which could be the cause..........
i also believe when you are ill you live from clinic to clinic appointment...you have such a short time with the doctor ...to some extent they are too busy to point you in a direction ..but so many people now are living longer with the after effects of mayor illness such as cancer , macmillan over the last couple of years have been pushing this issue for help and support .....
i believe the site should be more informative/interactive..last year i completed a 6 week online forum with macmillan in partnership with standford uni ...this was so good helped so much
bronte maybe you could investigate this it may give you some ideas...
chris regional meetings i agree totaly with this ....do you think as i am an only an hour away from york they would let me go to theirs ....think i will ask ....
all take care
janet
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Jayne
- Posts: 194
- Joined: 16 May 2011 11:33
- Contact:
Re: PLEASE CAN YOU HELP
I was informed of this site when I visited St James Hospital. My professor gave me the MDS UK Patient Support Newsletter (issue 1, September 2010). So I guess I was lucky to find you all this way. He also gave me a booklet called 'Understanding Myelodysplastic Syndromes:A patient handbook'. My professor went through it with me and marked what was relevant to me. My haematologist had previously given me information about MDS taken from the Macmillan website and from this info (last page)my GP suggested I call Leukaemia Care (I wanted advise on how to tell my children) and they were very supportive and sent through a lot of literature. So I had a lot of help in receiving relevant information from the very beginning, plus it is in my nature to use the internet, I am a PA and I am used to organising things and researching things.
As mentioned, I had prior to my appointment searched the web and was certain I would be going in immediately for a stem cell transplant. I was relieved to speak to my professor, he reassured me quite a lot and I came out of there feeling as if I had escaped a death sentance and that I was ok for now. Lucky again I think. My GP admitted his knowledge of this illness is limited but that he was currently studying it and reading up on it so that he can support me. He does this by just letting me talk and offload my feelings once a month anyway. All in all I feel I have been dealt with in a very professional way.
I have no complaints in the way I found this site. However, once on this site I find the lack of users does not make you want to check the site regularly. I would say that the number of 'views' does not correspond with the number of people posting replies. So I think people are reading but not bothering to post a reply....why? I haven't really learnt anything new whilst using the site other than it is surprising how long people seem to stay at the same level of illness without deteriorating - it surprises me when people say I was diagnosed in 2008 and I think wow, 3 years - that is what I need to get my kids through high school before I have my stem cell transplant, so it makes me feel it is possible which is great. I use the site to talk to others who have MDS and not necessarily about the illness, just general chit chat. When I first log on to the forum I usually click on 'active topics' to see who is leaving posts. I also receive email notification when a new post has been left on a topic that I have commented on!
I have used the tool that you download so that if you shop online a certain percentage goes to MDS patient support and as I shop at Sainsburys, every time I shop, MDS gets 2.5% and as a family of 4 adult appetites our shopping bills are ridiculously high.
I also volunteered my story to the journalist. Not heard anything back, but maybe I am not 'poorly' enough yet. I did say that they could maybe follow my story on an annual basis...could be interesting (if I deteroriate
), or maybe not from a readership point of view if I remain the same which is my intention 
.
Janet, of course you can join the York/Yorkshire group! Although, I have yet to make contact with everyone so at the moment as far as this site is concerned there is only me, lol! Oh, and I think I am the 41 year old that Janet refers too.
Jayne
As mentioned, I had prior to my appointment searched the web and was certain I would be going in immediately for a stem cell transplant. I was relieved to speak to my professor, he reassured me quite a lot and I came out of there feeling as if I had escaped a death sentance and that I was ok for now. Lucky again I think. My GP admitted his knowledge of this illness is limited but that he was currently studying it and reading up on it so that he can support me. He does this by just letting me talk and offload my feelings once a month anyway. All in all I feel I have been dealt with in a very professional way.
I have no complaints in the way I found this site. However, once on this site I find the lack of users does not make you want to check the site regularly. I would say that the number of 'views' does not correspond with the number of people posting replies. So I think people are reading but not bothering to post a reply....why? I haven't really learnt anything new whilst using the site other than it is surprising how long people seem to stay at the same level of illness without deteriorating - it surprises me when people say I was diagnosed in 2008 and I think wow, 3 years - that is what I need to get my kids through high school before I have my stem cell transplant, so it makes me feel it is possible which is great. I use the site to talk to others who have MDS and not necessarily about the illness, just general chit chat. When I first log on to the forum I usually click on 'active topics' to see who is leaving posts. I also receive email notification when a new post has been left on a topic that I have commented on!
I have used the tool that you download so that if you shop online a certain percentage goes to MDS patient support and as I shop at Sainsburys, every time I shop, MDS gets 2.5% and as a family of 4 adult appetites our shopping bills are ridiculously high.
I also volunteered my story to the journalist. Not heard anything back, but maybe I am not 'poorly' enough yet. I did say that they could maybe follow my story on an annual basis...could be interesting (if I deteroriate
), or maybe not from a readership point of view if I remain the same which is my intention .Janet, of course you can join the York/Yorkshire group! Although, I have yet to make contact with everyone so at the moment as far as this site is concerned there is only me, lol! Oh, and I think I am the 41 year old that Janet refers too.
Jayne
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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janetstanford
- Posts: 335
- Joined: 01 Nov 2010 17:54
- Contact:
Re: PLEASE CAN YOU HELP
Hi Jayne
yes you may be the 41 year old i refer to
??...sorry i was led to believe it was age related ?? i was quite young 
so to speak (did not feel it ) ..your hospital seems to have been very good in the info you got i am still waiting for anything although they do know i have joined this site...i took them news letters ect did they use them ???
i do agree with your comments in regards to 3 years getting the kids through school that was my thoughts in may 2008 as at the time my son was 15 and my daughter 13 ..i can not begin to put into words how i felt the way i had i let them down ?? they are now 18 and 16 doing a levels / gcse just a week to go.. it is stress but i am so happy to be here as you i thought transplant /death .... as you i visit the site to look for posts so i can chat to others who have the same /similar knowing they understand what we have to cope with ect....i also wish more would post i believe if we chat /share ect this would help us all..
so you are the person who may set up a meeting in the York area well if you do and will let me... i will try my best to get there....
look forward to your next post.....please take care
Janet
yes you may be the 41 year old i refer to
??...sorry i was led to believe it was age related ?? i was quite young so to speak (did not feel it ) ..your hospital seems to have been very good in the info you got i am still waiting for anything although they do know i have joined this site...i took them news letters ect did they use them ???i do agree with your comments in regards to 3 years getting the kids through school that was my thoughts in may 2008 as at the time my son was 15 and my daughter 13 ..i can not begin to put into words how i felt the way i had i let them down ?? they are now 18 and 16 doing a levels / gcse just a week to go.. it is stress but i am so happy to be here as you i thought transplant /death .... as you i visit the site to look for posts so i can chat to others who have the same /similar knowing they understand what we have to cope with ect....i also wish more would post i believe if we chat /share ect this would help us all..
so you are the person who may set up a meeting in the York area well if you do and will let me... i will try my best to get there....
look forward to your next post.....please take care
Janet
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Jayne
- Posts: 194
- Joined: 16 May 2011 11:33
- Contact:
Re: PLEASE CAN YOU HELP
You see Janet, our stories are pretty similar (my children are 13 and 15) and so you give me hope that I will still be here as me as they finish high school. And that gives me comfort and hope, so the forum is a very good thing.
I really do look forward to meeting you, and if nothing does get arranged perhaps we can arrange to meet for a coffee and lunch (and maybe a cheeky glass of wine, lol). I would like that
I really do look forward to meeting you, and if nothing does get arranged perhaps we can arrange to meet for a coffee and lunch (and maybe a cheeky glass of wine, lol). I would like that
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
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janetstanford
- Posts: 335
- Joined: 01 Nov 2010 17:54
- Contact:
Re: PLEASE CAN YOU HELP
Hi
so good to get instant post back yes hope and comfort that is what we all need ...and for 3 years time A levels and gcse at the same time i say buy the wine in bulk you may need it
....
and a meeting have to say like to lunch (A HOBBY) just put a pizza in the oven yes late but have a viral thing this week not eating much
...
just answered other posts from june ect
glad i entered the site today has kept me busy
take care always
janet
so good to get instant post back yes hope and comfort that is what we all need ...and for 3 years time A levels and gcse at the same time i say buy the wine in bulk you may need it
....and a meeting have to say like to lunch (A HOBBY) just put a pizza in the oven yes late but have a viral thing this week not eating much
...just answered other posts from june ect
glad i entered the site today has kept me busy
take care always
janet
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