Thursday, 21 January 2016

Dear GovNet Advisory Board, This is Groundhog Day, From a Patient.

Since this letter has been published, it has been brought to my attention that there were speakers who had long term health conditions. They were listed in their professional capacity with specific organisations to talk about their organisational experiences rather than from a patients' perspective. Although I can no longer say there were no people with long term conditions at the event, the sentiment of this letter, where the day to day on the ground experience of everyday people with long term conditions was lacking at the event still absolutely stands. I refer to David Gilbert's blog, "We are all patients. Yes and no." to explain this subtle but important difference.
From my perspective, the event still didn't have the opportunity to hear directly from people with long term conditions or carers about what matters to them, and that needs addressing. 
My apologies if I have mislead anyone. 

Dear Rt. Hon Lord Foulkes of Cumnock, Baroness Hilary Armstrong of Hill Top, Lord Archy Kirkwood of Kirkhope, Sir Robert Worcester KBE, DL, Lord Goodlad KCMG PC and Cheryl Gillian MP (GovNet Advisory Board),

As the Advisory Board for GovNet, I wanted to let you know about the Long Term Conditions 2016 conference that took place today that was run by GovNet.



Last year, the event also caught the attention of myself and other patient leaders on Twitter, and we commented vocally on Twitter that it was totally inappropriate for people with long term conditions to not be there. A last minute change was made to include a patient speaker.

But as the event for 2016 was covered on Twitter today, it was like Groundhog day, with no patients or carers who weren't there in a formal professional capacity listed as speakers in the plenary or breakout sessions. I have had no response from the @LTC2016 Twitter account, hence this open letter.

To have an event about long term conditions, without a significant presence of people with long term conditions there, is at best a waste of time and at worst a waste of lives, as systems continue to work around professionals and not with patients.

This is ethically and morally irresponsible and wrong.

If the aim of the conference as state below from the website is true, not having patients and carers there talking about what really matters means that aim can't be achieved. How can you help patients live healthily and independently if we aren't there to tell you how we already live and what would actually help us achieve that? How can you legitimately talk about having leading expert speakers with no speakers holding primarily the expertise of lived experience as non-professionals or non-corporates - now widely recognised as having parity of esteem with professional expertise. Patients and carers are the key stakeholders, of course.
How can something be prestigious without these essential components of a conversation about health?
...The Long Term Conditions Conference 2016 will explore the policies, strategies and best practice being employed to tackle long-term conditions and help patients live healthily and independently.
Access to leading expert speakers along with the opportunity to actively network with other sector leaders, decision makers and key stakeholders make this the most prestigious event of its kind. The one day format will provide everything you and your fellow delegates require to move forward under the direction of the current agenda and utilise the information delivered on the day...
I am not guilty of 'blue sky thinking' or 'wishful thinking' as patients and carers are already involved in conferences. The BMJ are championing this, building on the work of the PatientsIncluded.
NHS England have (to varying degrees) involved patients and carers in their high profile events for long term conditions, such as Future of Health (2013, 2014). The Kings Fund often involve patients in their events, as does the College of Medicine. By many, it is now considered standard in healthcare events to hear from people about what matters to them and their personal experiences of health conditions. There are plenty of people like Rosamund Snow, David Gilbert and Ceinwen Giles who have argued the rationale behind this far more articulately that I can, and I would encourage you to read their work.

There are no excuses left for not involving patients and carers and listening to lived experience in events in 2016.
“You can never make the same mistake twice because the second time you make it, it's not a mistake, it's a choice.”
Myself, my fellow patient leaders and the other 15 million people living with long term health conditions and our carers want to know why you have chosen, in 2016, to ignore half of the conversation about long term conditions.

Yours sincerely,

Anya de Iongh
Person living with long term conditions, Patient Leader

29 comments:

  1. Agree wholeheartedly. However, wouldn't the funding/resources used for Conferences be better used to more practical use ? Instead of talking about possible solutions to issues, lets tackle the actual issues directly.

    ReplyDelete
    Replies
    1. I agree. Lots of money wasted.Loads of long term conditions can be treated with appropriate prescribed exercise (not always drugs). There should be much more emphasis on streaming patients to physio and exercise classes/education. Physios already know how to help.

      Delete
    2. A GREAT SPELL CASTER (DR. EMU) THAT HELP ME BRING BACK MY EX GIRLFRIEND.
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      Delete
    3. Hi Friends i am so glad to writing this article today to tell the world how Dr Emmanuel cured my HSV VIRUS,i have been detected with HSV-1 AND HSV-2 since five years ago, ever since then my life has been in complete bizarre and agony,i have used so many drugs that was prescribed to me by several doctors,but it didn't cure my HSV VIRUS neither did it reduce the pain,until a certain i was checking for solution in the internet,then miraculously came across Dr Emmanuel the powerful herbalist that cure numerous individuals HSV-1 AND HSV-2 INFECTION,i explained everything to him and prepared a cure that cure my HSV-1 AND HSV-2 disease totally after receiving his herbal medicine, so my friends viewers why wait and be suffer when there is someone like Dr Emmanuel that can cure any disease HIV/ CANCER/ HEPATITIS B VIRUS, you can contact his via E-mail: Nativehealthclinic@gmail.com IG:  or WHATSAPP +2348140073965 GOD BLESS YOU ALL?       

      Delete
    4. Hi Friends i am so glad to writing this article today to tell the world how Dr Sayo cured my HSV VIRUS,i have been detected with HSV-1 AND HSV-2 since five years ago, ever since then my life has been in complete bizarre and agony,i have used so many drugs that was prescribed to me by several doctors,but it didn't cure my HSV VIRUS neither did it reduce the pain,until a certain i was checking for solution in the internet,then miraculously came across Dr Sayo the powerful herbalist that cure numerous individuals HSV-1 AND HSV-2 INFECTION,then i contacted his email: sayoherbalhealer@gmail.com i explained everything to him and prepared a cure that cure my HSV-1 AND HSV-2 disease totally after receiving his herbal medicine, so my friends viewers why wait and be suffer when there is someone like Dr Sayo that can cure any disease HIV/ CANCER/ HEPATITIS B VIRUS, you can contact his via email: (sayoherbalhealer@gmail.com) check his FB page:  https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/ OR visit his websites website; http://sayoherbalhealer.website2.me/  check blog: https://sayoherbalhealer.blogspot.com/  

      Delete
    5. I have been suffering from Herpes for the past 3 years and 8 months, and ever since then i have been taking series of treatment but there was no improvement until i came across testimonies of Dr Sayo on how he has been curing different people from different diseases all over the world, then i contacted him as well. After our conversation he sent me the medicine which i took according to his instructions. When i was done taking the herbal medicine i went for a medical checkup and to my greatest surprise i was cured from Herpes. My heart is so filled with joy. If you are suffering from Herpes or any other disease you can contact Dr Sayo today on this Email address: (sayoherbalhealer@gmail.com) or WhatsApp him on this Number +2349012175679 Visit his FB page: https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/    also visit website: http://sayoherbalhealinghome.com/ or check blogs: https://naturerootandherbscures.blogspot.com/

      Delete
    6. I was cured of CANCER with the used of natural herbs. My name is Mella Ken and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8 months ago, i suffered from CANCER for 3 yrs but with the help of Dr.Sayo herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunty from FIBROID, as soon as i heard she had FIBROID, i quickly refer her to Dr.Sayo and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr.Sayo and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Sayo now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr.Sayo have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis, HBP, STD, cancer, chronic, etc. Contact Dr Sayo through his Email address on: sayoherbalhealer@gmail.com or WHATSAPP/CALL him on+2349012175679 Visit his FB page: https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/    
      also visit website: http://sayoherbalhealinghome.com/ or check blogs: https://naturerootandherbscures.blogspot.com/ Please share the good news to other people once you are cured    

      Delete
  2. Grrr just scanned the #LTC2016 tweets and see what you mean! I have stopped participating now in conferences and meetings that don't have a patients/public included policy and evidence of implementing it (so that excludes the 'we tried and it was too hard' brigade). This gives me more time to put energy and time into those that do.....however this doesn't challenge the status quo and you are right to call this out Anya.

    ReplyDelete
  3. Ironic, when in Canada we have speakers like Simon Denegri and Neil Churchill coming to tell us how to "do" patient engagement effectively at conferences here. Also I have often heard mentions of the King's Fund as a model. I totally agree with your blog post.

    ReplyDelete
  4. Dear Anya,
    I have arranged a conference for June 2016 for patient's and HCP's to learn more about their conditions. http://www.b12deficiency.info/conference-2016/
    I wonder if you would consider sharing this link with your readers? I have three patients who will present as well as the 4 speakers
    It will address, B12 deficiency, methylation issues, CFS, Autism, pyroluria and thyroid. All long term conditions and many patients struggling to access correct treatment. I hope this is of interest to you. Best wishes Tracey

    ReplyDelete
  5. Agree wholeheartedly. Professional talk about us becuse they have met us, but we need to speak for ourselves. You are so right. Keep shouting Anya and if you need I will shout too

    ReplyDelete
  6. Agree wholeheartedly. Professional talk about us becuse they have met us, but we need to speak for ourselves. You are so right. Keep shouting Anya and if you need I will shout too

    ReplyDelete
  7. Greatest thanks to Dr Oyagu for his herbal drugs that he prepared for me and when i start using it in just 2weeks i was completely cured and that ended my HERPES SIMPLEX 1&2 DISEASE i am so happy and grateful to Dr Oyagu . after reading about him on a testimony of Jason Cash on a blogger. i knew suddenly Dr Oyagu was the right Doctor to cure my HERPES SIMPLEX 1&2 DISEASE. i discuss with Dr Oyagu and he prepared a herbal medicine for me and when it got sent to me in south korean . i used the herbal medicine and 2weeks and i went to check up again. after 15years of suffering from HERPES SIMPLEX 1&2 at last i am smiling once again. Dr Oyagu also has remedy to others disease like COLD SORES,HIV/AIDS,DIABETES.CANCER,HIGH BLOOD PRESSURE AND MANY MORE. I oblige everyone to contact this powerful herbalist Dr Oyagu and be free from your suffering. contact his WhatsApp line: 2348101755322 or his Email:Oyaguherbalhome@gmail.com

    ReplyDelete

  8. HERPES CURE IS REAL:

    Indeed Doctor Disu has a cure for Herpes Virus,
    I was once victim of the herpes virus with many epidemics on my body, I was cured of the virus thanks to the help of Doctor Disu herbal medicine. I have met most of his patient testimonials on blogs and social media pages, cured of various illnesses.

    I contacted him with his email address to which he replied and asked me a few questions and the preparation method for which I paid, he sent me herbal medicines and with his prescription I drank herbal medicine for 21 days and the epidemics on my body were healed after concluding herbal medicine,

    I went for the test and my result was negative with no trace of virus in my blood. You can also be cured, contact him on his official email; africanherbalcure@gmail.com or WhatsApp him on +2348167485904.


    He said he had an herbal remedy for
    Diabetes, cancer, fibroid, hyperglycemia, hepatitis,
    HIV, heart disease and liver disease 
    website: https://drdisuafricanherbalcure.weebly.com

    ReplyDelete
  9. I Can't still believe that i got cured from Genital Herpes through herbal treatment from Dr Oyagu who I met through the internet, I actually couldn't believe it at first because it sounded impossible to me knowing how far I have gone just to get rid of it. Dr Oyagu send me his medicine which I took as instructed and here I am living a happy life once again, a big thanks to Dr Oyagu, I am sure there are many herbal doctors out there but Dr Oyagu did it for me, contact him oyaguherbalhome@gmail.com , also call or whatsApp him on +2348101755322

    ReplyDelete
  10. I Want To Appreciate Dr.OYAGU for his great deeds, I Was Diagnosed With type 2 Herpes Virus Last year,And i Was Looking For Solution To Be Cured Luckily I Saw Testimonies On How Dr.OYAGU Cure Herpes Virus I Decided To Contact Dr.OYAGU I Contacted Him He Prepared A Herbal Medicine Portion And Sent It To Me,I Started The Herbal Medicine For My Health.He Gave Me Step By Step Instructions On How To Apply It, When I Applied It As Instructed, I Was Cured Of This Deadly Herpes Within 2 weeks, I Am Now Herpes Negative.My Brother And Sister I No That There Are So Many People That Have The Same Herpes Virus Please contact Dr OYAGU To Help You Too,And Help Me To Thank Dr.OYAGU For Cure Me, I’m Cured By Dr. OYAGU Herbal Medicine,His Contact Email:oyaguherbalhome@gmail.com

    Or Cell Whatsapp Number +2348101755322 thank you

    ReplyDelete
  11. Life is always beautiful when you have good health.i have be in pain For almost 2 years had Hpv and I was lonely and sad luckily I was directed to a very kind and Great Dr Oyagu who helped me cure my Hpv and today I am free from Hpv and very healthy thank you so much Dr Oyagu Email him: oyaguherbalhome@gmail.com or whatsapp him via +2348101755322

    ReplyDelete
  12. Hello! I'm very excited to inform everyone that I'm completely cured from my HSV 1&2 recently. I have used Oregano oil, Coconut oil, Acyclovir, Valacyclovir, Famciclovir, and some other products and it's really help during my outbreaks but I totally got cured! from my HSV with a strong and active herbal medicine ordered from a powerful herbalist and it completely fought the virus from my nervous system and I was tested negative after 12 days of using the herbal medicine. I'm here to let y'all know that herpes virus has a complete cure, I got rid of mine with the help of Dr Oyagu and his herbal exploit. Contact him via email: oyaguherbalhome@gmail.com call or whatsApp him on +2348101755322.

    ReplyDelete
  13. PERFECT  NUTRAL HERBS AND VEGANS CURE FOR Herpes 1&2 THAT WORK FAST WITHIN A COUPLE OF WEEKS WITH DR ELINFOH HERBAL MEDICINE,  I saw so many testimonies about Dr ELINFOH a great HERBAL DOCTOR that will help you CURE and give you the rightful health to live a joyful life, i didn't believe it at first, but as the pain got worsen and my life was at risk after using lots of ARV drugs from the hospital and no changes so i decided to give a try to Dr Elinfoh I contacted him also and told him i want a cure for Herpes , he gave me advice on what i must do and he deliver it to me in my home address i gave him and i got the medicine which i use according to his instruction, and today i must say I am so grateful to this man Dr Elinfoh for curing me from Herpes and for restoring me back to my normal health and a sound life and i am making this known to every one out there who have been trying all day to be cured from Herpes or any sickness should not waste more time just contact him with his details below, believe me this is the only way to get cured from Hepres , this is the real solution we all have been searching for. Do not waste more time contacting him today for you can also leave a sound and happy life. contact info below. Email: (drelinfohherbalhome@gmail.com) or WhatsApp or Call him on: +2348110492072. and you can as well contact him on other issues you are having like*HEPATITIS B*DIABETICS*CANCER*ALS*HERPES*BODY REDUCTION*BREAST ENLARGEMENT*FIBROD*CANCER*PREGNANCY MISCARRIAGE*Relationship issues etc.. ** Neoplasms*Cardiovascular Disease (CVD)*Chronic Respiratory Diseases* Mental and Behavioral Disorders*Alzheimer’s DiseaseEmail: (drelinfohherbalhome@gmail.com).
    Via whatsapp +2348110492072

    ReplyDelete
  14. PERFECT  NUTRAL HERBS AND VEGANS CURE FOR Herpes 1&2 THAT WORK FAST WITHIN A COUPLE OF WEEKS WITH DR ELINFOH HERBAL MEDICINE,  I saw so many testimonies about Dr ELINFOH a great HERBAL DOCTOR that will help you CURE and give you the rightful health to live a joyful life, i didn't believe it at first, but as the pain got worsen and my life was at risk after using lots of ARV drugs from the hospital and no changes so i decided to give a try to Dr Elinfoh I contacted him also and told him i want a cure for Herpes , he gave me advice on what i must do and he deliver it to me in my home address i gave him and i got the medicine which i use according to his instruction, and today i must say I am so grateful to this man Dr Elinfoh for curing me from Herpes and for restoring me back to my normal health and a sound life and i am making this known to every one out there who have been trying all day to be cured from Herpes or any sickness should not waste more time just contact him with his details below, believe me this is the only way to get cured from Hepres , this is the real solution we all have been searching for. Do not waste more time contacting him today for you can also leave a sound and happy life. contact info below. Email: (drelinfohherbalhome@gmail.com) or WhatsApp or Call him on: +2348110492072. and you can as well contact him on other issues you are having like*HEPATITIS B*DIABETICS*CANCER*ALS*HERPES*BODY REDUCTION*BREAST ENLARGEMENT*FIBROD*CANCER*PREGNANCY MISCARRIAGE*Relationship issues etc.. ** Neoplasms*Cardiovascular Disease (CVD)*Chronic Respiratory Diseases* Mental and Behavioral Disorders*Alzheimer’s DiseaseEmail: (drelinfohherbalhome@gmail.com).
    Via whatsapp +2348110492072

    ReplyDelete
  15. I have suffered with herpes since I was young it is only the last few years I got to know so I started to look for a cure I went to several hospitals but to no avail. So I came here online to see if I could find a cure so I came across a page here a man was sharing testimonies about Dr Ohikhobo for his natural herbs cure for herpes so I decided to give it a try it only took two weeks of me taking his herbs and I was completely cured from herpes. contact Dr Ohikhobo today if you want to be cured from herpes or any kind of disease too .
    His Email: drohikhoboherbalcenter@gmail.com
    His Whatssap: +2348103601042
    His Blog: https://drohikhoboherbalcenter.blogspot.com/

    ReplyDelete
  16. I have suffered with herpes since I was young it is only the last few years I got to know so I started to look for a cure I went to several hospitals but to no avail. So I came here online to see if I could find a cure so I came across a page here a man was sharing testimonies about Dr Ohikhobo for his natural herbs cure for herpes so I decided to give it a try it only took two weeks of me taking his herbs and I was completely cured from herpes. contact Dr Ohikhobo today if you want to be cured from herpes or any kind of disease too .
    His Email: drohikhoboherbalcenter@gmail.com
    His Whatssap: +2348103601042
    His Blog: https://drohikhoboherbalcenter.blogspot.com/

    ReplyDelete
  17. Hi Friends i am so glad to writing this article today to tell the world how Dr Sayo cured my HSV VIRUS,i have been detected with HSV-1 AND HSV-2 since five years ago, ever since then my life has been in complete bizarre and agony,i have used so many drugs that was prescribed to me by several doctors,but it didn't cure my HSV VIRUS neither did it reduce the pain,until a certain i was checking for solution in the internet,then miraculously came across Dr Sayo the powerful herbalist that cure numerous individuals HSV-1 AND HSV-2 INFECTION,then i contacted his email: sayoherbalhealer@gmail.com i explained everything to him and prepared a cure that cure my HSV-1 AND HSV-2 disease totally after receiving his herbal medicine, so my friends viewers why wait and be suffer when there is someone like Dr Sayo that can cure any disease HIV/ CANCER/ HEPATITIS B VIRUS, you can contact his via email: (sayoherbalhealer@gmail.com) check his FB page:  https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/ OR visit his websites website; http://sayoherbalhealer.website2.me/  check blog: https://sayoherbalhealer.blogspot.com/  

    ReplyDelete
  18. I have been suffering from Herpes for the past 3 years and 8 months, and ever since then i have been taking series of treatment but there was no improvement until i came across testimonies of Dr Sayo on how he has been curing different people from different diseases all over the world, then i contacted him as well. After our conversation he sent me the medicine which i took according to his instructions. When i was done taking the herbal medicine i went for a medical checkup and to my greatest surprise i was cured from Herpes. My heart is so filled with joy. If you are suffering from Herpes or any other disease you can contact Dr Sayo today on this Email address: (sayoherbalhealer@gmail.com) or WhatsApp him on this Number +2349012175679 Visit his FB page: https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/    also visit website: http://sayoherbalhealinghome.com/ or check blogs: https://naturerootandherbscures.blogspot.com/

    ReplyDelete
  19. I was cured of CANCER with the used of natural herbs. My name is Mella Ken and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8 months ago, i suffered from CANCER for 3 yrs but with the help of Dr.Sayo herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunty from FIBROID, as soon as i heard she had FIBROID, i quickly refer her to Dr.Sayo and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr.Sayo and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Sayo now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr.Sayo have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis, HBP, STD, cancer, chronic, etc. Contact Dr Sayo through his Email address on: sayoherbalhealer@gmail.com or WHATSAPP/CALL him on+2349012175679 Visit his FB page: https://www.facebook.com/Sayo-Herbal-Healer-100145798345000/    
    also visit website: http://sayoherbalhealinghome.com/ or check blogs: https://naturerootandherbscures.blogspot.com/ Please share the good news to other people once you are cured    

    ReplyDelete
  20. I already gave up on ever getting cured of HSV2 because i have try many treatment none of them work out for me I have be to different hospital they always tell me same thing there is no cure for herpes when i came across a post about Dr oyagu, in the net from a lady called Rebecca i contacted him and he reassured me with his herbal medicine which i took according to the way he instructed, that how i was cured. I doubted at first because i have been to a whole lot of reputable doctors, tried a lot of medicines but none was able to cure me. so i decided to listen to him and he commenced treatment, and under two weeks i was totally free from Herpes. i want to say a very big thank you to DR oyagu for what he has done in my life. feel free to leave him a message on email oyaguherbalhome@gmail.com and also WhatsApp him +2348101755322.. or vist his website https://oyaguspellcaster.wixsite.com/oyaguherbalhome. He can still be able to help you with this herbs medicine: 1...ALS CURE/DIABETES CURE/EPILESY/HPV CURE/LUPUS/HEPATITIS/CANCER/GOUT

    ReplyDelete
  21. Greatest thanks to Dr Oyagu for his herbal drugs that he prepared for me and when I start using it in just 2weeks I was completely cured and that ended my HERPES SIMPLEX 1&2 DISEASE i am so happy and grateful to Dr Oyagu . after reading about him on a testimony of Jason Cash on a blogger. I knew suddenly Dr Oyagu was the right Doctor to cure my HERPES SIMPLEX 1&2 DISEASE. I discuss with Dr Oyagu and he prepared a herbal medicine for me and when it got sent to me in south Korean . I used the herbal medicine and 2weeks and i went to check up again. after 15years of suffering from HERPES SIMPLEX 1&2 at last i am smiling once again. Dr Oyagu also has remedy to others disease like COLD SORES,HIV/AIDS,DIABETES.CANCER,HIGH BLOOD PRESSURE AND MANY MORE. I oblige everyone to contact this powerful herbalist Dr Oyagu and be free from your suffering. contact his WhatsApp line: +2348101755322 or visit his Website https://oyaguspellcaster.wixsite.com/oyaguherbalhome Email:Oyaguherbalhome@gmail.com

    ReplyDelete
  22. I started on COPD Herbal treatment from Ultimate Life Clinic, the treatment worked incredibly for my lungs condition. I used the herbal treatment for almost 4 months, it reversed my COPD. My severe shortness of breath, dry cough, chest tightness gradually disappeared. Reach Ultimate Life Clinic via their website www.ultimatelifeclinic.com . I can breath much better and It feels comfortable!

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