To be honest with you, I didn’t have the foggiest idea what coeliac disease was, and when I did find out, it took me forever to learn how to say it, let alone spell it! When the doctor said the words ‘disease’ it did throw me into a mini panic. It was only when he started telling me all the things I will no longer be able to eat; bread, pasta and my beloved pot noodle, that I curled up into a ball and whispered “not my pot noodles!”

The thing was, I was in my first year of University. I was having a pretty hard time and I thought that those were the reason behind my stomach problems. I remember during the time before my diagnosis I was hell bent on believing it was rice behind my tummy woes. I remember ordering a take out curry and opting for the naan bread instead! Oh how wrong I was!

Being told I had coeliac disease did throw the spanner in the works. I loved my wheat laden foods,  especially my wheat filled ready meals! I couldn’t cook and could just about toast some bread without setting my dorms on fire. On top of that, I found myself in unfamiliar territory   in the ‘gluten free aisle’, looking at strange sounding foods and then eyeing up the price tag and having a cardiac arrest – “£2.90 for a small loaf of bread!!”

Finding out you have coeliac disease can be really tough and in all honesty, it took me a while to really embrace it and get my head round it. It’s a whole lifestyle change and sometimes it’s hard to let go of old habits, especially if you’re anything like me, who relied heavily on ready meals and take outs. So finding out I had to cook my own foods from scratch drove me to despair! I had to learn to cook and fast!

Which is why I started my blog The Gluten Free Student Cookbook, to show others that you don’t have to be Gordon Ramsay to be able to cook edible and great tasting food. I’ve lost count the amount of times I’ve burnt gluten free cupcakes or tried to find the easiest way to make gluten free tortilla wraps! But with every food disaster I encountered [and believe me, there's been plenty], I had to keep going and to never give up. As I mention many times on my blog, I’m not a Michelin star chef, but if little Saara from Yorkshire can cook a gluten free pizza from scratch, then anyone can!

If you’re reading this and feel like how I felt when I was diagnosed with coeliac disease or if you find yourself confused, please come visit my blog. There is a ‘contact me’ page which sends me an email where I’d be more then happy to help, give advice or we can both moan about how it’s not fair to never have McDonalds again! Things do get better, it just takes a some time.

Visit me at www.glutenfreestudentcookbook.co.uk/

There was so much I wanted to prove, and so much I wanted to do. All the hiding places where my bottles had been, in cupboards, wardrobes, garden sheds, airing cupboard, handbags were cleared, and where in the past, I had purposely spread the outage over weeks to that the local council didn’t know I was a lush, now I wanted openness and transparency.

Eyes were clear and bright, skin was refreshed, eating habits were slowly restored. There just didn’t seem to be enough hours in the day. The only trouble was that no one else seemed to share my enthusiasm.

So overwhelmed with the freedom that I now had and waking up each morning raring to go that I really had not stopped to think of what I had done to those who had been putting up with me over the last few years, particularly in the last few months. More than anything I really had no desire to re visit the guilt, I had buried it and wanted it to go away. So after a few weeks of being high on life instead of oblivious in booze, I hit the buffers.

Facing up to the damage I had done was the most difficult part of all. I am not particularly religious, but now I had to atone. That could only be done by trying to convince those who were more than sceptical of my recovery that I could prove them wrong and make amends.

Of course on top of this, all my friends were drinkers, mainly heavy drinkers. I had changed. I certainly wasn’t going to become evangelical about my not drinking, and for the most part they really didn’t want to see me anyway. That was really difficult to come to terms with, for even though they were dependent, I really did enjoy their company, but not enough to endanger my sobriety. The reality was sinking in, and that was that my life was changed in so many ways and the void was immense.

Coming through it took at least two years. I did have enormous mood swings, and really could not see or remember how to have a good time without booze. It had always been the catalyst for every occasion, good or bad. Proving myself and being watched, slightly paranoid about that, but it was how I felt, and having to rebuild a life without the underpinning of my forever house and the lifestyle that went with that too, brought on a maelstrom of emotions.

But as the saying goes what doesn’t kill you makes you stronger and it did. We moved to a tiny but very pretty cottage, and started all over again.

The heavy drinking buddies who I thought I had lost, I found again, or rather they found me, as for some, they too had reached their nemesis, and sought me out for some advice and help. That is how I started my little Sanctuary, and how it grew into what it is today.

But there were diversions along the way, one of the most wildly wonderful was getting paid to do shoot lunches for an eccentric Lord and his alcoholic wife! That was a ride never to be forgotten!!

You can’t think your way out of a disorder that you behaved your way into.

This insight is incredibly helpful for parents and carers.  You can’t talk the patient out of the disorder that they behaved their way into.  All you can do is help them behave their way out of it.

Clinical experts including Dr Andrew Wright, Dr Jonathan Bowling Clinical Nurse Specialist Saskia Reeken and Speciality Nurse Deborah Mills will be on hand to answer your questions or concerns about skin cancer and sun safety.

To participate in the clinic you need to be a member, this is quick, easy and free and can be done here. If you are already a member you can post your questions for the experts now in the clinic.

We hope you will join us in this lively and informative event!

The study was carried out by a multi-disciplinary team at hospitals, universities and research units with the objective of determining the number of true infestations, assessing the types of pathogen each patient believed themselves to be infested with and gathering details about the type of specimen(s) provided and how it was presented (ie type of container etc) to the clinician treating them.  The presentation of alleged proofs of infestation is commonly referred to as the ‘matchbox sign’ but the present study further backed their proposal to change this to ‘specimen sign’.

None of the patients in the sample had a true infestation – even those who brought specimens that were infesting parasites (eg a snake mite and a flea) proved on examination not to be infested or to show signs of current infestation.  There were wide variations in the types of alleged infestations reported and some interesting differences in the different European Centres – for example in pre-Alpine Italy there were no ‘inanimate’ pathogens reported, whereas in France these accounted for 63 per cent of the cases seen.  Overall only 35 per cent of patients believed they were infected with an actual parasite.

Just under 50 per cent of the patients in the study presented a specimen as proof of the infestation.  These might be a single object or up to 20 specimens from a single patient.  Most frequently these proved to be skin particles or hair.  Insects were also represented but of these only two were human parasite species and in both cases the patient showed no sign of being infested.  The specimens were most frequently seen in plastic bags, envelopes, in small glasses or boxes or stuck to adhesive tape – matchboxes rarely featured.  The researchers suggested that in future these ‘specimens’ might be brought as photographs, videos and on other virtual media.  This is important as patients are accessing increasingly sophisticated equipment to research their own condition.  Some patients have spent vast time and money resources to prove their infestation.

All the researchers stressed that it was vital that true infestation is ruled out prior to making a diagnosis of Delusional Infestation, and that all researchers continue to search for a true infestation if the patient continues to have symptoms.

Antony Bewley one of the research team says:

“The symptoms presented by these patients could be due to actual infestation, or indeed to other skin disorders, or disorders of the nervous system, therefore it is tremendously important to ensure that all physical causes are ruled out before moving to a diagnosis of delusional infestation.  If a patient feels they are not being taken seriously it can be very difficult to begin upon any kind of meaningful therapy to address the psychological issues. I and my colleagues always analyse carefully the material with which my patients present”

Peter Lepping from Glyndŵr University Wrexham says: “Other research has shown that treatment can be very successful.”

Visit www.bad.org.uk for more information

Please remember that gardening is a workout that needs warming up for and never forget to warm down!!

I know people think they mean well and I catch myself telling my daughter to stop scratching occasionally, but what I found helps most of all for my daughter is distraction and to remove the hand away without saying a word, or whilst talking about a totally different subject.

Inevitably sometimes you just gotta scratch and get it over with!! Sometimes there is no way around it! I know my fellow sufferers can relate! When people say to me, “Why do you scratch when it’ll only make it worse” I ask them “If you had a sensation of insects crawling all over your arm, could you just sit there and ignore it?” Food for thought eh!?

You’ll agree with me - that is focus.  Putting the ball into the hoop. Now let’s look closely at our healthcare system and ask ourselves if they have kept their focus on the patient. I’m afraid that the answer is – “no”.

Healthcare institutions have become focused on information technology, turning patients and caregivers into users who access  portals and schedule appointments online by the grace of the head office poohbahs.

How did  healthcare technology become so dominant?

Health records were originally paper files  owned by the physician and used to maintain the doctors note on the clinical process. Their primary purpose was to collect physician notes and assist in the process of helping patients get better.

EHR –  electronic health record systems evolved as an exercise in information technology by healthcare providers in order to reduce the amount of paper that doctors and healthcare organizations  have to deal with.  In other words – operational efficiency for the organization and not better medicine was the business requirement for EHR systems. This results in systems  like this:

Epic practice management makes registration intuitive, efficient and virtually error-proof. Prelude provides tailored workflows, wizards and extensive error checking to help users complete registrations swiftly and accurately. Rules-based workqueues efficiently organize follow-up activity according to flexible criteria, targeting problem registrations and delegating follow-up to the appropriate staff.

When healthcare providers migrated from paper systems to electronic health records (EHRs), what we also got was a lot more data. As Dr. Martin Wehlou notes:

What we get in most electronic healthcare records systems is an evenly thick layer of prose stretching from a variable point in the far past to some point in the near past, without any bumps or changes of scenery.

The first problem a physican has with EHR systems is lack of overview of the patient.

You’d think that a patient’s life, from a doctor’s viewpoint looking at the EHR, would present a timeline of medical problems that either are solved, or are ongoing. Instead we get a collection of badly written novels, intensely unreadable and intensely boring.

As a reaction to the technology bloat of EHR, another “health record” was introduced, the personal health record, the PHR.

A PHR contains observations of daily living by the patient – information such as  sleep, diet, exercise, mood and adherence to medication plans.

It’s easy to see how PHR systems, not being regulated under government privacy regulations and not being integrated with healthcare organization IT, and not being integrated with clinician workflow are an easy application to develop.

It’s not to hard to develop a standalone mobile app or Web application that can collect  observations of daily living by the patient and help a person diet and exercise more consistently and effectively. It’s the integration and privacy regulation that makes things complex and costly from a technology perspective.

Personal health records are excellent tools for patients  but the real payback of PHR happens when we get the data to the doctor.

Who leads the process?

Does the doctor lead the process with his medical expertise and scientific training or does the patient lead the process with observations of daily living?

In my mind there is no question that the clinical process must be lead by the physician.

The connection between a physician and his patient is not symmetrical.

The physician is the expert on clinical diagnosis and treatment and the patient is the expert on his personal experience.

If we want to get it right and avoid typical post-hoc errors created by patients using hearsay instead of evidence based medicine, we need to place the patient and caregiver in the center and use the physician as the leader.

To make this happen, and bridge the gap between personal experience of patients and clinical expertise of doctors, we need to provide  a practical digital connection between doctor and patient.

The best way we have to do that today is to provide the physician with a consumer service he can plug into like he plugs into the electric grid.

The consumer service provides a personalized, private social network for a clinician and her patients. It uses the best in social applications to enable doctors to educate, provide focused guidance and receive patient feedback on experiences and critical events.   It is designed from the ground up to be private and secure.

The private social network for healthcare uses social applications that are integrated, effective and enable a doctor to use patient feedback to make decisions easier and faster.

The private social network for healthcare is of particular importance for patients with chronic conditions such as Parkinsons, diabetes, heart disease, CHF, older people with multiple issues or children with CF, muscular dystrophy, or even worried parents with children going through the usual cycles of illness.

But having thought a lot about our experience, I would go further. I would even say that, depending on who you are, the road to a diagnosis might well be one on which it’s better to travel hopefully than to arrive. S and I were somewhat reassured to be told at various points that the ‘obvious’ diagnosis was not necessarily correct. In fact, we were even told with some certainty that S definitely didn’t have Alzheimer’s. Though it was clear many years ago that she had some form of dementia we found that it was possible to ‘get on with our lives’. One diagnosis and 12 years later, I am happy that we had all that time together, sharing some great experiences, thinking that things might not be so bad after all.

Some people who are desperate for a diagnosis want it so that they can ‘get on with their lives’. But you have to do that anyway and I would have thought it’s a bit easier if you have some hope that you might not have a terminal disease (other than the one called life that we all have).

Some people believe that once they have a diagnosis, the cavalry will arrive with loads of support. Sadly, they are often disappointed at the length of time that takes. And people have sometimes been told, on diagnosis, that nothing much can be done for them.

Looking back, I don’t think that an ‘early diagnosis’ would have been a good thing for us at all. I actually believe that we’re still benefiting from the fact that we had so many good years. And all that time, S had Alzheimer’s  - apparently. Well, maybe we can still have some good times.

Read more at: http://adventureswithdementia.blogspot.co.uk/