World Thrombosis Day Shines Spotlight on Deadly Blood Clots – Read our interview with Dr Hillary Jones on Deep Vein Thrombosis


Dr Hilary Jones on Thrombosis

Dr Hilary Jones on Thrombosis

Last Monday 13th October saw World Thrombosis Day 2014.  To mark the day we conducted an interview with Dr Hilary Jones on the subject of Thrombosis.

But did you you know this seven important facts about thrombosis?

1) Sitting at a desk, in a car, or a train for just a 90 minute period of time can reduce blood flow behind the knee by 50%, increasing the risk of thrombosis – a blood clot
2) Other risk factors: Major surgery, such as orthopaedic or surgery for cancer, or extended time in the hospital, heart diseases, pregnancy, smoking, hormone therapy, being overweight/obesity, dehydration, family history and cancer
3) Deep vein thrombosis (a blood clot in the leg) or a pulmonary embolism (a blood clot in the lung) kills one person every 37 seconds in the western world (1,2) – in England more than one in 1,000 adults could be affected by blood clots every year (3)
4) Blood clots can also travel to the brain causing strokes. These types of clots occur in people who have atrial fibrillation (an irregular heartbeat) – a condition which affects over one million people in England (4)
5) New data reveals that 75% of people in the UK wouldn’t know what to expect if they experienced a blood clot in the lungs (5) – highlighting the need to raise awareness of the signs and symptoms of thrombosis



6) itting at a desk, in a car, or a train for just a 90 minute period of time can increase the risk of thrombosis – a blood clot
7) There are a number of effective treatment options available to treat and prevent blood clots

The interview was conducted bu Antonia Lipinski on behalf of PatientTalk.Org.

Lipinski So what actually is DVT and why is it so dangerous?
DR JONES Well DVT stands for Deep Vein Thrombosis. This means that a blood clot forms in the veins which lie deep in the tissues of the body and this particularly affects the calf muscle veins. When people complain of pain and tenderness in the calf with swelling and redness it could be that they’ve got Deep Vein Thrombosis. The significance of Deep Vein Thrombosis is this that it is a very common disorder and it can have far reaching consequences. If a piece of the blood clot should break off into the circulation and be carried onwards towards the heart and lungs its means its can cause a pulmonary embolism. That is part of a clot that has broken off and has lodged in the lungs obstructing the oxygenising of blood and that can have very serious consequences and leads to a fair number of deaths every year.
Lipinski Who can get it?
DR JONES Well all most anybody can suffer from deep vein thrombosis. We know that it is more common with age but a young person who has had an injury, somebody who is having surgery, somebody is pregnant and somebody with a family history or a previous history of blood clots because some people have a genetic predisposition towards forming clots in the blood. All of these people, people who smoke even are more prone to blood clots so nobody is immune from blood clots and every 37 seconds one person in the Western world dies from a blood clot so that’s how significant it is.
Lipinski How is it treated?
DR JONES Well we know that we can to some extent we can prevent blood clots in people before it has actually happened. For example if somebody is having surgery we use compression stockings to increase the blood flow through the veins and prevent the stasis which occurs during the operation but more often then not somebody who has a deep vein thrombosis or pulmonary embolism we prevent further occurrences. We treat them. We anti coagulate them. PATIENTTALK.ORG Do flight socks actually work?
DR JONES Yes if they are up to the back of the knee and they are compressing the veins significantly. When someone is on a long haul flight, just as any kind of inactivity would do, it increases the blood flow through the veins and prevents the risk of blood clots so they really do help just as they do in a hospital setting or in anyone who is inactive and immobile for several hours at a time.
Lipinski How is PE different from DVT?
DR JONES Well a pulmonary embolism is where the blood clot breaks off from the leg and is carried up towards the lungs and blocks an artery which the feeds the lung with blood that is ready to be oxygenated. So somebody with a pulmonary embolism will be short of breath. They’ll have chest pain. They’ll have an increased heart rate. They might even cough up some blood and feel light headed. Also they might have no symptoms at all in the early stage as my brother didn’t when he had multiple pulmonary embolisms. Now he is a fit guy. He is an oarsman who rows to a very high standard and he had an abnormal collection of blood vessels in his thigh which he didn’t know about and he wondered why he was a bit more breathless when he was ain a rowing race. He saw a friend who happened to be a cardiologist who recognised the signs straight away. He was treated successfully and those abnormal blood vessels were removed. As I say anyone can be affected and the pulmonary embolism is much more serious because in many cases it can prove fatal if not treated quickly.
Lipinski What lifestyle changes can we make to prevent DVT?
DR JONES I think the first thing is to stop smoking because this thickens the blood and makes it stickier so blood clots are more likely to form. So giving up smoking is a really good step forward. Losing weight or normalising weight so you are not carrying too much weight is good. Reporting any kind of injury around the calf muscle particularly is important. Exercising on a regular basis because when you are using your leg muscles they are pumping and compressing in a rhythmically way the blood vessels underneath the muscle so the muscle pump is a good way of preventing blood clots and improving blood flow. So exercise, giving up smoking and just taking care of yourself are all important, normalising weight, these are all important. Probably nothing more so then recognising the signs and symptoms of DVT. It would be pain and tenderness in the calf, swelling of the ankle and foot, redness in this area, dilution of the surface veins so the veins look more prominent and an increased warmth compared to the other side. It always a good to compare the affected leg to the other side and if you have any doubts at all go and see your doctor and say could this be a DVT.

 

Further regional statistics on people diagnosed with DVT and PE in England 2010/11 can be found at: http://www.hscic.gov.uk/hes

 

References

1. Cohen AT et al. Thromb Haemost. 2007; 98 (4):756-764;

2. Roger VL et al. Circulation. 2012; 125(1):e2-e220

3. From prevention to treatment; taking the pulse of NHS services. Bayer HealthCare. November 2013

4. AF Association, A Guide to AF within the Cardiovascular Disease Outcomes Strategy. December 2013

5. Data on file Bayer HealthCare. Global online survey conducted in over 20,000 adults aged 18-64 between 17th July-11th August 2014. UK sample size 1,000 adults

6. International Society on Thrombosis and Haemostasis. World Thrombosis Day. Available at: http://www.worldthrombosisday.org/ Last accessed October 2014

7. Patient UK. Deep vein thrombosis. Available at: http://www.patient.co.uk/health/deep-vein-thrombosis-leaflet Last accessed October 2014

8. Turpie AGG et al. BMJ. 2002; 325: 887-890

9. NHS Choices. Causes of deep vein thrombosis. Available at: http://www.nhs.uk/Conditions/Deep-vein-thrombosis/Pages/Causes.aspx Last accessed October 2014

10. Mayo Clinic. Deep vein thrombosis. Available at: http://www.mayoclinic.org/diseases-conditions/deep-vein-thrombosis/basics/symptoms/con-20031922 Last accessed October 2014

11. Life Blood, the Thrombosis Charity. Reducing the Risk of Thrombosis. http://www.thrombosis-charity.org.uk/perch/resources/1399925355-reducing-the-risk-of-e-thrombosis-crystalmark-feb-2013.pdf

Respiratory Care Week- A week that honors respiratory therapists and promotes lung health.


COPD Awareness

COPD Awareness

Normally awareness weeks have the objective of helping people find out about various different medical conditions.

While of course Respiratory Care Week is about promote lung health. (It really is time to give up smoking!) It also honours the work of respiratory therapists!

Respiratory therapists are healthcare professionals who specialise in supporting patients with lung related conditions such as asthma, emphysema, pneumonia, COPD, cardiovascular disorders, and trauma.

You can find out more at the KU Medical Center website.

Because Respiratory therapists are rare in Europe it would be great if our American readers would share their experiences of being treated by these healthcare professionals.

Please use the comments section below to add your story.


World Pediatric Bone & Joint (PB&J) Day – drop round and find out more


World Pediatric Bone and Joint (PB&J) Day

World Pediatric Bone and Joint (PB&J) Day

As readers of this blog will know we have been trying to follow the events and commemoration days which form Bone and Joint Health National Awareness Week. You can find out about the events here.

Today is World Pediatric Bone & Joint (PB&J) Day.  The aim of World PB&J Day is to highlight the impact of musculoskeletal conditions on children and educate healthcare providers and the public about children’s musculoskeletal health issues.

The Adolescent Female Athlete Triad is the theme of this year’s World Pediatric Bone and Joint (PB&J) Day. Developed by the multi-disciplinaryPediatric Specialty Group of the United States Bone and Joint Initiative (USBJI), this is one of a series of educational stories on important bone and joint-related conditions about which kids, adolescents and their parents should be aware. Topics that have been covered include, obesity, slipped capital femoral epiphysis, kids and Vitamin D deficiency.


October is Lupus Awareness Month – Lack of Lupus Awareness is leading to delay in diagnosis say LUPUS UK. What was your experience?


Lupus Awareness Month

Lupus Awareness Month

“What?” I hear you cry October is Lupus Awareness Month? May is Lupus Awareness Month. And yes you would be right but this is one of those moments when the UK like to be different.

You could argue of course that the more awareness the better. And this is certainly the case with an autoimmune condition such as Lupus.

So I thought I would mark the month by letting you know a bit about some recent research conducted by LUPUS UK. They discovered that the average time from the first symptoms presenting itself and finally getting a diagnosis was over seven years. Which means that many people with Lupus were just not getting the treatments they needed to lessen the impact of the main symptoms and to limit potential damage to the kidneys, heart, lungs or brain.

Elyssa a 22 year old Lupus patient commented “”When I was a child my face would present the butterfly-shaped rash whenever I was exposed to the sun. My family GP would prescribe Roc sunscreen and that was that. As I got older I experienced a lot of fatigue and would sleep upwards of 12 hours a day. My GP suggested this was the result of teenage hormones and diet. At 19 a lesion grew on my face which would itch, weep, bleed, scab and peel. In the course of two years I saw three different GPs who all dismissed my symptoms or just prescribed topical antibiotics. It wasn’t until I refused to leave the GP’s surgery that I was referred to the hospital and had a breakthrough. When I met my consultant I was soon diagnosed as having lupus. The lesion started to fade and calm after less than two weeks on medication, and whilst it has scarred, it is ten times better than it was.”

So LUPUS UK has started a campaign along side h the Primary Care Rheumatology Society and The Royal College of General Practitioners to raise awareness amongst Primary Care Doctors such as GPs.


Chris Maker , a director at LUPUS UK expressed his concern about PCP support saying ” we do expect GPs to have an open mind as we know that early diagnosis leads to a better prognosis in most cases”.

I have to say I found this comment very troubling. So I am hoping to get your view. It would be great if you could share your opinions on the following questions?

a) How long did it take you to get a diagnosis of Lupus?
b) How well briefed do you think your family doctor was about Lupus and helping you get a diagnosis?

It would be great if you could share your thoughts in the comments section below!

Thanks very much in advance.

World Trauma Day – Can anyone tell me anything about this awareness day?


World Trauma Day

World Trauma Day

As eagle eyed readers of PatientTalk.Org will have spotted we have been giving a fair bit of coverage to Bone and Joint Health National Awareness Week. You can find out about the events here.

So today as you may be aware is World Trauma Day. While starting some research this morning I came up with nearly nothing.

Actually that is not quite true – the Hindustan Times has produced an excellent article on the day and why it is so crucial in India. Indeed they argue for emergency and first aid training in schools.

Up to 400,000 deaths death year in India could be prevented with better emergency care. While I except that it is a bigger issue in developing nations, without the sorts of infrastructure which you and I seem to take for granted, it beggars belief that it is not considered a big issue in developed nations.

So does anyone know anymore? It would be great if you could share any information you might have about the day. Please use the comments section to share any links and so forth.

PS For our purposes trauma her refers to an injury such as you might receive from a road accident.


Autism and Parenting – Our readers share their Autism Tips!


Autism Awareness

Autism Awareness

As some of you may know we have been running a series called Autism and Parenting. The aim of this set of posts is to provide people in the autism and ASD community with a forum to share ideas of how best to parent children on the spectrum.

We decided to share with you the results of a recent discussion on our Facebook page AutismTalk. Yesterday we asked the page a very simple question “What is your best autism tip that you would like to share with our readers?”. In less than 24 hours we received nearly 500 responses. So naturally we wanted to share some with you.

It would be great if you could share your own ideas and suggestions in the comments section below!

The comment which gained the most likes was Jamie when she said “Nobody is more of an expert on your child than you.” While Justina mentioned “Never underestimate the intelligence of autistic people!”.

Adrian had a popular but important message for fathers of children with autism “Dad’s get involved. Yeah you may have a demanding job, but not only does being involved benefits your child, it benefits you as well. You are also your child’s advocate. Make a commitment to go to as many Dr appointments, to as many therapy sessions, to as many parent invites your child may have at his/her school as you can. You owe it to your child to be just as active as mom is being when it comes to ensuring your child get the best care that he/she can. The burden of raising an autistic child shouldn’t fall squarely on mom alone. Step up!!”


“Never beat yourself up or call yourself a bad parent. From experience, you will have easy days and not so good days. Have patience and get rest when you can. Get as much help and therapy for your child. was Karen’s important message.

Tonya recommended “PATIENCE! It is very frustrating at times to be a parent or caregiver to someone on the spectrum. It is really easy to lose your patience with them at times, but you have to remember that they didn’t choose to be this way!” while Sara suggested “ACCEPTANCE each child just wants to know they are loved and safe. Don’t try to change who they are, try to be more like them “.

Kyle said “Don’t shelter your child. Allow them to find their place in this world rather than protect them from it.”

On a practical note Sherleen said “Triple lock the doors or install alarms if you have an escape artist.” While Amy shared “Use “first this” , “then”….. that works well for my daughter”.

Another said ” Always remember they will see the world and feel the world in their own way ! And it’s ok to be different !”. While yet another reader “Always be prepared and have a good routine to avoid a meltdown“.

Dana suggested this and I have to say I agree “Make them live normal. Teach them right from wrong. Demand appropriate behavior. Teach them to play, imagine. Color therapy, speech therapy, behavior therapy. Autism doesn’t mean, no holds barred. My son 22 had full blown Autism. He’s high function Aspie now. Start each day with clean slate.”

I’d like to end by quoting way more than on reader with a statement which gets my full support “Choose your battles!!”.

So what is your tip?

Why not share in the comments section below.

Thanks in advance.

Life with Fibromyalgia. Tips for living with Fibro from People with Fibro!


Fibromyalgia Awareness

Fibromyalgia Awareness

A few months ago we ran a very successful discussion on our Facebook Page, called FibromyalgiaTalk, entitled “What advice would you give to a person who had just been diagnosed with fibromyalgia?”. We then covered some of the responses in a blog post which you can read here.

The responses were amazing both in terms of quantity and quality so we decided it would be useful to run a similar discussion asking for tips you might have about living with fibromyalgia.

Firstly I’d like to say thank you to the 250 people (so far) who have replied since we started the conversation on Monday. So we would love to share with you a few of the tips . It would be great if you would care to share any of your own in the comments box and the end of this blog post.

“Find a doctor who knows and treats fibromyalgia. Get lots of sleep. Ignore everyone else’s expectations of you and slow down on life. Rest, drink lots of water and TRY to stretch daily. Your friends and family will all give you ideas on what you should do to feel better–it might get annoying—just smile and know they are just trying to help! Hope this helps!!” was great advice from Jennifer!

Brittany was simple but to the point ” Reduce stress as much as possible, take hot baths and time for yourself”


Wendy was very sensible “I had to learn to forgive myself for not being “me” any more, most days I manage it! My usual advice still stands, be kind to yourself, learn how to pace and use the NO word when you need to x”. Another talked about pacing “When your having an almost pain free day and feel good , don’t push yourself because you will pay for it a few days later , sometimes with days of pain …”

One reader shared this great idea for a birthday present “Ask for gift vouchers for therapeutic massage for birthdays and Christmas it hurts a bit at first but you feel so good afterwards. Best present ever x”

Tricia was very practical “Natural Vitamin D3, make sure it’s D3, about 30-50,000 iu a week will make a tremendous difference. Most fibro sufferers are unable to absorb normally and are deficient. Magnesium is good. Take fish oil to go with the D3 and take K2. They enhance each other. Also, heat helps. Hot baths, and extra blanket, and warm sweater. Massages and chiropractic care are definitely a help. Yoga and exercise on your good days. Lastly, rest and reduce stress because these are our biggest triggers along with the weather. Rain is evil. Lol! Take care of yourself.”

And Shell talked about “Do your own research. Believe in yourself & write all of your issues down.”

Which, of course, is one of the aims of this post. So as we said earlier what should be added to this list of tips?

Please use the comments section below to share yours.

World Osteoporosis Day 2014. Men and Osteoporosis – get informed with this brilliant infographic.


World Osteoporosis Day and Men

World Osteoporosis Day and Men

As many of you know by now this week is Bone and Joint Health National Awareness Week. You can find out about the events here.

The final event is going to be World Osteoporosis Day which is held on the 20th October or this coming Monday.

Normally (and wrongly) osteoporosis is seen as a condition affecting women so World Osteoporosis Day has produced this brilliant infographic to help spread awareness of how osteo impacts men. You may also find this article on treatment options for people with osteoporosis of value.

Please do share with everyone you know especially men.

Thanks in advance.


Life with Multiple Sclerosis. Some tips about living with MS from People with MS.


Multiple Sclerosis Support

Multiple Sclerosis Research

A month or so ago we asked the readers of our Facebook page MultipleSclerosisTalk to share their answers to the question “Have you any advice for somebody who has just been diagnosed with multiple sclerosis?”. The results were so successful we decided to share then om a VoxPop blog called Water and Walking.

A couple of days ago we decided to follow up the blog post with another asking People with Multiple Sclerosis (PwMS) what tips they would like to share about living with MS with our readers.

The results were incredible so we decided to share a few with you. We have got nearly 500 so far so can’t include them all. It would be great if you wanted to share your ideas and suggestions in the comments section below.

Christina’s was the most popular when she said “Take a deep breath and always look forward never backwards. Times will get hard occasionally but you must be grateful for the good times. Never give up and fight for your independence and never ever give up. You got this, even if you think you don’t.” Traci supported this saying “You are stronger than you think you are”.

Laura emphasised the need to take control through research 2Research, research, research. Avoid the DMD’s because they don’t work! MS can be controlled by diet. Food is our medicine! Check out Swanks diet for MS. I have been following this for 9 months and I’m feeling great. I also take LDN and supplements. Recovery and healing are possible if you take the right road. A strong positive mindset is also key….”

Isla said “find yourself a holistic doctor”.

Jackie was very practical “Heat is your enemy. Try to stay cool. Your body will start to feel better once you cool down.”.

Sharri had lots of great ideas “Don’t feel bad for feeling bad. Keep your sense of humor. Increase your sense of humor. Join an MS / chat group, local support group and fun www.meetup. com groups.
Nutritional supplements also help you feel better and the meds to work better. Eat the fish and spit out the bones of what people say who do not have MS. Nurture and do kind things for yourself.
Know that you will have good days, great days, bad days and horrible days. ”


Like many of our readers Christina felt we should listen to our bodies ” Don’t let MS change who you are! Biggest challenge was learning to listen to my body, cognitive issues, and the MS Fatigue (which is not the normal fatigue people have) If you can learn to listen to your body, eat healthy and exercise and most important stay true to who you are and maintain a positive attitude (you may have MS but MS does not have you or define you) then you will see MS becomes more of the “Ah” that is why I feel this way or that makes sense now and can move forward. I took it as a positive when I was diagnosed (March 2012) as I honestly thought I was losing my mind (cognitive is bad for me) and I did not understand the fatigue I was having. It was a relief to know there was a reason for it and now I know what to do to help with these issues. Attitude is the key to MS success (as with any illness). I find if I keep moving I’m fine. It is when I give in to MS that I get bad. It is a choice you have to make every day if you are going to get up or let MS win. I REFUSE to give in to it. There are many days I forget I even have MS and again, that is a choice I make. Make sure your family and friends are aware that you are still you and that YOU will let them know if you cannot do something as only you know how you feel and your limitations (which you learn as you go but always try). I have amazing support with all of my family and friends. I asked them to not treat me any differently and I promised I would let them know if I needed help (which I admit is hard for me to ask for any help, I’m very stubborn) but there are things you will need to say “hey, my body does not react well if I did this, can you help”. You will be amazed by taking one day at a time, one breath at a time how well you will be able to handle your MS and live life just like you did prior to your diagnosis. Research the different types of MS and make sure you understand which level you are diagnosed. Unfortunately, there are more severe cases of MS and I pray for those with the more severe cases. So we cannot dismiss what we have but we can listen to what our body tells us and make the right choice to get up and live! Prayers as you begin learning your new path in life.”

Finally Georgia went the other way and said “Don’t listen to other people’s “advice” that don’t have MS and have absolutely no idea what you may be going through! Only you know your body, no one else does!”

So what do you think about these tips? Do you have any you would like to share? If so please do use the comments section below to add your ideas.

Thanks very much in advance.

Ulcerative Colitis – what it is and how to treat ulcerative colitis!


Professor Chris Probert

Professor Chris Probert

New research findings this week show that people with ulcerative colitis (UC) who have had surgery to remove their colon continue to experience UC symptoms, with around three-quarters of patients saying the biggest impacts of the disease are on their emotional state (in terms of depression, anger or anxiety levels) and ability to rest/sleep.

We interviewed to find out more about ulcerative colitis and the treatments avaiable for ulcerative colitis.


PATIENTTALK.ORG -I’m here with Professor Chris Probert, Gastroenterologist of Royal Liverpool Hospital and today we are talking about some new research findings which show that 4 out of 5 people with ulcerative colitis who have had surgery to remove their colon continue to experience symptoms, with around 3 quarter of patients saying the biggest impacts of the disease are on their emotional state. So professor Probert I was wondering if you could please just explain a little bit of about what ulcerative Colitis is and how it differs from Crohn’s disease.

PROF PROBERT – Thank you , ulcerative Colitis is an inflammatory condition affecting the large bowl colon ,and when the colon is inflamed, the patient will experience diarrhoea, cramping and often will bled. Crohn’s disease is a different condition although it’s a bowl inflamed, the small bowl and the large bowl are inflamed in some patients and the disease is quite patchy, so some patients with Crohn’s disease it will just be a small segment of the small bowel, small segment of the large bowl or it can be all over so they are quite different in the distribution and the treatment options are different as well.

PATIENTTALK.ORG -So speaking about distribution, how common is this and how many people are affected by this?

PROF PROBERT – In the UK we think there are about 150 thousand patients with ulcerative Colitis.

PATIENTTALK.ORG -So could you please just run through the early sings of and symptoms that someone would experience if they had ulcerative Colitis undiagnosed?

PROF PROBERT – Patients with ulcerative Colitis will experience initially typically diarrhoea and they will realise this has not gone away the same way as it would with a bug and after a week or two they are starting to start feeling unwell and maybe notice some bleeding, Some patients it can settle down a little bit and then return later, for others it just escalates and it can go from perfect health to life threatening Colitis within a matter of weeks. So there’s a spectrum of ways in which patients present from mild through to moderate.

PATIENTTALK.ORG -Its mentioned in the research that some patients are experiencing a flare up, how often does this lead to hospitalisation?

PROF PROBERT – Patients who have a flare up are the ones who have diarrhoea and bleeding and between the flares hopefully patients are feeling relatively well without too many symptoms. During a flare up if the patient is going to the toilet more then 6 -8 times a day then they should definitely be considered by a specialist to go into hospital, if the patient is feverish then they will clearly need to be in hospital having intravenous therapy as that is a very serious situation potential life threatening situation . Overall about 1 in 10 patients will have a severe flare up at any time.

PATIENTTALK.ORG -So if you’re diagnosed with ulcerative Colitis what sort of life style changes are to be expected and what sort of impact does this have on the people you work with?

PROF PROBERT – Ulcerative Colitis can have a very big impact om patients life’s, if they are lucky enough to have a mild disease it’s a matter of taking the right medication, being a little bit wary , not exposing yourself to the risk of food poisoning and so forth. Patients with a more moderate disease this is starting to get a bit more serious, the treatment will be taken more frequently, they are likely to have steroids more often, they have steroids side effects and that can make you very moody, gain weight and make you feel quite groggy. And for those patients they start to feel rather edgy and insecure you know they don’t know whether the next time they are going to have diarrhoea, they are constantly on the lookout for lavatories and with a country with poor public loos that is a problem, patients know every lavatory between home and school or home and their work place, it makes you very very insecure, it knocks your confidence and constant fatigue.

PATIENTTALK.ORG -Ok so just running through the findings a little bit, the research was done by merk showman limited and what they found was only a third of patients are completely satisfied with their current treatment. So this obviously has something to do with the findings that 4 out of 5 people who have the surgery to have their colon removed are still experiencing the symptoms, so what sort of other options are there? It says here that Nice the medical recommendation of the NHS the body is looking at issuing some guidance on medical options of treatment, would you like to talk about that for a minute?

PROF PROBERT – So patients dissatisfied with therapy we are aware that certain treatments don’t work for everybody and some, despite our best efforts, with conventional therapy will have ongoing symptoms and require repeated courses of surgery, those patients who aren’t settling we need to think about another strategy. For many patients there is a second line group of treatments or surgery, now our concern is that there is a group off treatments that aren’t considered often enough and which at the moment NICE is reviewing, these are the biologic treatments, for patients with disease that’s not settling on conventional therapy a sub group of those will clearly respond to a the biological therapies it will turn the disease off, will prevent surgery in that group of patients, it’s not for everyone but for some patients the biologics will be life transforming. NICE at the moment are saying that this is not a treatment that they are going to support, it’s up for consultation and the consultation closes next Wednesday and we will be very interest if the patients or their relatives who has got an interest in Colitis take the opportunity of going to the NICE website or going to the Crohn’s and Colitis website and making their comments on whether they think this is a good decision. So if NICE say ‘No’ there will be more patients having surgery, if NICE say ‘yes we can use these treatments’ then that small group of patient who needs the treatments we can save an operation.

PATIENTTALK.ORG   Can you compare the situation in the UK for treatment purpose with Europe or America? Is there more common use of a medical option in Europe or is the situation broadly similar?

PROF PROBERT – Europe is big place and there is some variation country to country and it depends a lot on what we would call reinvestments and who’s going to pay for the biologic treatments and if the funder is able to support the drug, patients having them results you have heard. North America, the threshold for giving these treatments is substantially lower than in Europe and access to biologic seems a lot easier.

PATIENTTALK.ORG -So it’s in common use in USA?

PROF PROBERT – It is yes

PATIENTTALK.ORG -So is this something that NICE takes into account? Do they look at it being played out in other countries?

PROF PROBERT – No sadly they don’t, NICE have got a very strict way of looking at the world they see how many patients you can treat to get one patient healthy , how much would it cost to teat that community of patients to get that one person healthy, so the cost for an individual may not sound too much but because you have to treat a few more patients who don’t respond, the package of care seems  to be rather expensive and so by their estimates it seems to be the package of care costs more than 30 thousand pounds they are going to turn that treatment down and because there are some non-responders to the treatments the cost therefore appears to be higher than that and they are saying no at the moment to everyone , what we would like to purpose is that select out the patients who need it , who are responding to it and you only know perhaps when giving them the treatment for a few weeks couple of cycles), carry on treating those patients who are responding, don’t treat the ones who aren’t responding and that would change the hole dynamic and will change the cost of these treatments to something that might  seem acceptable to NICE but at the moment it comes down to economics.

PATIENTTALK.ORG -So anyone who’s interested in this final guidance, you did mention when this would be issued, what was the date for that?

PROF PROBERT – The way to get information on this is to go to the Cohn’s and Colitis website, they have a link to the NICE guidance and you can have a read the full documentation and anyone can upload their comments on the NICE website and consultation closes at 5pm next Wednesday, so anybody listening with Colitis or have got relatives with Colitis who thinks this is important to them should be going to the NICE website, read the documents, make your own mind up and then post your comments.

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