The Chronic Crohns Campaign UK. ( TCCC.UK ).
The Chronic Crohns Campaign UK - Why We Are Here !!!
TCCC.UK & TNHC.UK Campaign Literature.
The Chronic Crohns Campaign UK - Other TCCC.UK Contacts
TCCC.UK - Funds To Kings College London.
TCCC.UK - Action Medical Research details.........
TCCC.UK Campaign News ,Updates and Success !!!
The Chronic Crohns Campaign UK- The Breaking News.
TCCC.UK &The 3 Natural Alternatives In Sarah's Story
The New DNA Crohns Vaccine @ Kings College London.
TCCC.UK & Aloe Vera - Nature's Silent Healer. Books
TCCC.UK Raising Awareness - Press Coverage 1996 to 2009.
TCCC.UK - More Breaking News On MAP !!!!!!!!!!!!!!!!!!!!!!
Sarah's Crohns Success Story From 1989 to 2006.
Sarah's Crohns Success Story From 2001 to 2006.
Over 90 Degrees Still Does Not Kill Map Bacteria In Milk.
Tim Page - My Side Of The Story In All This Campaigning.
How To Order Aloe Vera, As We Do, At A Lower Price In The UK.
How To Get A Glyconutrient Powder Here In The UK
"Give Us A Quid Or Two" -The DNA Crohns Vaccine Appeal
PARA'S Medical Advisory Council
PARA'S Scientific Advisory Council.
A Message To Internet Hackers / Spammers !!
In Loving Memory Of Hadge Elliott 1956 To 2005.
The New DNA CrohnsVaccine Summary 2006.
TCCC.UK Consultation with DEFRA in 2002 & 2004.
The Chronic Crohns Campaign UK Press Info 1996 to 2009.
The Orkney Islands Crohns & U.C. N A C Group
Glyconutrients - What Are They ?
More On Glyconutrients - The 8 Sugars That Heal.....
Birmingham Contact For TCCC.UK - Stuart Morris IIHHT ICHT dip
MMR = Crohns or Autism ?
How To Get Aloe Vera & Other Aloe Vera Items Outside UK.
Crohns & Contraception.
More On MAP - The 2 AntibioticsTreatment By Prof JHT.
Other Interesting Natural Health Documents.
More On The Bacteria MAP - 2
Scottish News On Crohns
More On Fluoride
TCCC.UK & The BBC
Baby Milk - The FSA Update December 2006.
Prof John Hermon Taylor's New Update In March 2008.
Christmas 2009 & New Year 2010.
Crohns Sufferers - Some National Figures @ 2006
Crohns Disease By Eye Online
Intracellular Pathogen Group/St George's University London.
The Italian Crohns Campaign Connections.
Dr Ira Shafron M.D
For Jewellery Findings & Supplies In Tunbridge Wells, Kent.
A Friendly Ileostomy Councillor For Contact & Advice.
A Memorial Page To My Grandad Who Inspired Me.
Crohns & Food Intolerances & Illness.
TCCC.UK Petition To The UK Prime Minister + Another Petition
DrugWatch Check Them Out...
Crohns Research or IBD or IBS Stories In The News
Prof John Hermon -Taylor On You Tube & TV 2008..
Support Our New DNA Crohns Vaccine Fundraisers.
Further Water And Milk Press Coverage.
Can MAP Cause Ulcerated Colitis, As It Does Crohns..
TCCC.UK - Why We Are Here In 2008, To Help & Advise You.
TCCC.UK - Announcements In 2008.
Useful Addresses For Complaints On The NHS.
Hannah's Real Story - from 2006 to 2011....Ongoing.
Prof John Hermon -Taylor Updates In 2009.
Scientific Papers On IBDs.
New Crohns Book of Tim Page Crusader.
Need A Good Crohns Doctor ?
Prof John Hermon Taylor In Washington USA YouTube Links
New Crohns Support Group On Facebook
Tim Page - TCCC.UK On FaceBook & More....
Crohns Disease Contact The Chronic Crohns Campaign UK
TCCC.UK - Fundraising Events 2009
" MAP Doomsday " By Prof John Hermon Taylor - August 2
The Gift by Stuart Morris @ WonderfullyWell
New Youtube IBD Videos on Crohns & MAP.
TCCC.UK - Crohns Support Groups On Facebook.
Mycobacterium sub species Avium Paratuberculosis ( MAP )
Prof John Hermon Taylor -2010, 2011, 2012 - Updates.
Alternatives & Immunesuppressants - Working Together.
House Of Lords Debate On Crohns Disease 19th June 2000.
Sarah's Success Story Update In 2012
A Memorial Page To Cathy Lynn Bray -10/09/67 to 24/02/2012
Contact Information for The Chronic Crohns Campaign UK
Links for The Chronic Crohns Campaign UK
Do You Find This Crohns Site Useful ?
Hannah's Real Story - from 2006 to 2011 Ongoing......
The Story So Far……
October 2006 – Hannah (10 years old at the time) was taken to her GP reporting some abdominal discomfort and a sore throat. Hannah had three or four bouts of tonsillitis over the previous fifteen months and each time was prescribed a course of antibiotics, but each time the sore throat returned.
November 2006 – Hannah was appearing to lose some weight and was feeling lethargic. She was taken to her GP again who decided to refer her to a Paediatric Consultant at a local hospital. The appointment was not until early January 2007, so the family decided to take a fortnight’s holiday in Sharm El Sheikh, Egypt. Hannah ate well on the holiday but continued to lose weight. Visits to Luxor Temples, the Pyramids and the Valley of The Kings were a great adventure for them all and seemed to keep Hannah going.
In the second week of the holiday, blood started to appear in Hannah’s stools. Naturally they were all worried but tried not to let it spoil the holiday. Hannah’s appetite started to decrease.
January 2007 - Shortly after the visit to the Consultant Paediatrician, Hannah was diagnosed with Crohn’s disease. Her blood inflammatory markers were raised and she was showing marks on her legs (called Erythema Nodosum) and her bottom was sore with a perianal skin tag that appeared to be red / inflammed. Hannah’s weight was now below the 50th centile whilst her height was between the 75th and 91st centile.
February 2007 – Hannah was put on an exclusion diet of liquid nutrition which was milk protein based (tested for MAP?) and came in the form of cartons. The goal was for Hannah to consume 6-8 cartons per day. Hannah found the cartons dull and unappetising to take and getting the required amount down her each day was hard going.
Easter 2007 – After 8 weeks on the drinks, Hannah showed a response, regaining weight and energy, and her blood inflammatory markers returning to normal. The family hoped things were getting back to normal. They took Hannah to Disneyland Paris with a friend to reward her for her bravery, but unfortunately toward the end of the holiday Hannah started to relapse with loss of appetite, abdominal pain, diarrhoea and some blood in her stool. Her inflammatory markers were raised again and her parents put her back on the drinks for 2-3 weeks. This time she showed no response to the drinks and her parents decided to admit Hannah to hospital.
Steroids were commenced and Hannah quickly responded to them and spent nearly a week in hospital, by which time normal appetite and weight gain were returning and the other symptoms started to reduce.
June 2007 - In mid June 2007, Hannah went to see two hospital consultants, one a surgeon. At this meeting, options for further investigation were discussed. The family rejected a colonoscopy in favour of an MRI because MRIs can give a better overall picture, are non-invasive, do not require full anaesthetic and do not carry the same anticipatory fear and risk of surgery. As Hannah had some serious allergies and as she had lost a pet to anaesthetic a few months before, the risks, both real and psychological, of going under full anaesthetic given the death of her pet rabbit and the potential for allergic reaction made the MRI approach the far better option.
The Consultant Paediatric Gastroenterologist leading the meeting agreed that this was an acceptable way forward to all. It was also agreed to put Hannah on Azathioprine although subsequent tests showed she could only tolerate a very low dosage of 25 mg per day.
At this meeting the Surgeon also did a little sales pitch about stoma’s and colostomy bags as if they were the best thing since sliced bread. This raised a red marker with Hannah’s parents about where he was coming from, a red marker that would be raised again later.
July – September 2007 – Hannah returned to a good quality of life and normality, reducing her steroid intake in the process. In August 2007, they went on a family holiday to the South of France and life was very much back to normal for all. On return from holiday, Hannah visited the Consultant Paediatrician again, looking well, and was greeted with the question "so is Hannah doing better or is this just the effect of a Summer Holiday?" The comment seemed strange, negative, insensitive and inappropriate, but nothing more was made of it at the time.
September 2007 – On 17th September 2007, Hannah underwent a general abdominal MRI. The results of this first MRI were not presented back to the family until 11th January 2008. An appointment on 17th December 2007 to review the first MI had to be cancelled because it was Hannah’s Mum’s due date for having a baby. Two weeks before the baby arrived at Xmas 2007, the general Paediatric Consultant saw Hannah and her Mum again and it was quite clear the tone and nature of the doctor / patient relationship was changing. The Consultant Paediatrician clinically stated that "Hannah is not well, so we are going to do surgery and give her Infliximab". Mother and daughter were left dumfounded by the announcement, when Hannah was feeling much better, had reduced her steroid intake significantly, was unsymptomatic and enjoying a good quality of life. Mother and daughter were left to break down in tears in the corridor afterwards, two weeks before the new baby was due.
What was so dumfounding was that it had been six months since the first MRI had been agreed and yet the family had no formal MRI feedback of scientific information or detailed presentation of treatment options on which to base any decisions.
January 2008 - Hannah’s Father went alone to the hospital to receive feedback from the first MRI. Hannah’s Mum was at home looking after a new baby and the Government had issued a guideline not to take children into hospital because of the Christmas Vomiting Bug, so Hannah was not taken along. Only the Surgeon was present at this meeting. The Paediatrician and lead Consultant did not attend. The meeting on the 11th January 2007 with the Paediatric Surgeon started badly with the Surgeon criticising Hannah’s father for following government guidelines and not bringing Hannah into the hospital. This raised another red marker with Hannah’s father about the surgeon’s cavalier attitude to hospital bugs.
After Hannah’s father managed to calm the Surgeon down, the focus switched to the MRI pictures. It became quickly clear that the surgeon was struggling to interpret anything meaningful from the MRIs because they had been done to an insufficient level of detail and also interpreting such pictures was outside his area of expertise and comfort zone. The meeting was concluded with the surgeon declaring that another MRI would have to be done to a greater level of detail. Hannah’s father agreed to this and the meeting ended.
February 2008 – Around this time, the Consultant Paediatrician put Hannah on an investigational use of Metronidozole which had some benefit in the perianal area but had to be discontinued after 25 days due to side effects of nerve tingling in the fingers and toes.
It was around Feb 2008 when Hannah’s parents discovered Tim Page’s website and got in touch with both Tim and Professor John Hermon Taylor for some advice. It was becoming clear that Hannah’s current medical team had no viable solutions for Crohn’s disease and were proposing to use Hannah as a surgery and pharmaceutical guinea pig and saw the ultimate conclusion of a stoma and a colostomy bag as a "good thing for children with Crohn’s". Their list of colostomy bag victims was already long.
It was also around Feb 2008 when Hannah’s parents started voicing their concerns about the knowledge, expertise, practices and procedures that they were encountering from the current medical team with the Consultant Paediatrician. It was at this point, after "treating" Hannah for over a year, that the Consultant Paediatrician admitted having no expertise in Crohn’s and was "lucky" to see five Crohn’s patients in a lifetime.
This was devastating news to Hannah’s parents who up until this point had put all their faith and trust in the Consultant.
March 2008 – Hannah underwent a repeat MRI on the 11th March 2008. Two days later and before Hannah and her parents had received any detailed feedback on the 2nd MRI, they received a pressurising letter from the Consultant Paediatrician urging Hannah to undergo surgery.
It was clear something was going to have to change. Around March 2008, Hannah’s parents started giving serious thought to Sarah’s alternatives, but having already been through a bad experience with "quacks", they were sceptical like most people are at first about alternatives.
In the meantime, letters and emails began flying backwards and forwards between Hannah’s parents and the hospitals. They had still not received a formal written report for the two MRIs nor had any of the questions they had submitted in writing answered and were becoming worried about the intentions and agenda of Hannah’s current medical team.
April 2008 – An appointment to feedback the results of the second MRI was scheduled for Wednesday 16th April with a date for endoscopy / colonoscopy of Friday 25th April 2008 pre-arranged seven working days later. Whilst Hannah’s parents wanted to hear feedback and results from the long awaited MRI, they became increasingly uncomfortable about the way this was being set up with a "fait accompli" of surgery 7 days later. Their assessment of the surgeon was that he would seize the opportunity during colonoscopy to declare "emergency surgery powers" to perform "concomitant surgery" that could result in incontinence leaving Hannah and her parents no option but to put a bag on against Hannah’s will and against her parent’s wishes.
At this stage, Hannah had been off the steroids a few weeks now and was doing well on her homeopathy remedy and Bee Propolis and Manuka Honey supplements. Hannah’s parents now wanted a 3 month observation window given the good progress that was being observed very quickly on just a couple of alternative remedies. Hannah’s parents wrote back to the surgeon stating that he should not pre-book surgery as a "fait accompli" but simply meet with them and Hannah to discuss any findings and proposals and give them time to consider. The surgeon wrote back that he was not happy to cancel the surgery slot.
This was the final straw for Hannah’s parents and Hannah. They had been increasingly pressurised for 3 months now, without presentation of scientific facts and data that had been requested. It was time to find a new medical team.
After some research into alternative medical teams with specialisms in Crohn’s disease, Hannah’s father put in a written request to Hannah’s GP for her to be referred to Guy’s / St. Thomas’ Hospital Trust in London. From April 1st, 2008, you can ask to be referred to an expert of your choice anywhere in the UK.
Because of the surgeon’s refusal to heed the request to not pre-book surgery before the meeting and until the facts had been presented and considered, the meeting got cancelled.
The referral was underway and as far as Hannah and her parents were concerned, they were now waiting for a 2nd opinion.
Unfortunately, the pressure from the old hospital continued unabated. A long withering letter was sent to Hannah’s parents by a Medical Director stating the obvious about Crohn’s disease, putting further pressure on for surgery and making thinly veiled threats about potential further action if the family did not comply.
Hannah’s parents simply wrote back stating the family’s right to see a written report of findings, proposals, risks, benefits and a consent form (they never sent the consent form despite being asked at least 5 times for one) and requesting to then be allow time to reflect without pressure as per NHS guidelines on what a patient has a right to expect.
On April 29th, 2008, Hannah’s parents finally received a letter from the Surgeon setting out detail of the two MRI reports and attempting to answer some of their questions from months ago. The surgeon’s letter was not on NHS letterhead and was dated 29th April, 2007?
The letter spoke volumes about the real agenda that had been going on behind the scenes. It was quite clear that they were proposing to put Hannah through a range of surgeries and chemotherapy using a drug called Infliximab which is untested and unproven in children, with the highest adverse reaction record according to the latest FDA report figures.
It also became clear from this letter that the surgeon held out little hope for the success of the proposed surgeries and that a stoma and a colostomy bag were almost an inevitability from his proposed "management plan".
Now it became clear to Hannah’s parents why the surgeon had eulogised "the bag" at previous meetings. It was clear that he thought this was the answer to Crohn’s disease. There was no mention of the risks and complications of a bag, the psychological impact, loss of a normal love life, never being able to enjoy a toilet visit in the normal way, nor that Crohn’s can reappear anywhere in the alimentary tract nor that a vaccine for Crohn’s is only three years away. There was also no positive acknowledgement that anti-mycobacterial and other more natural remedies such as Sarah’s Alternatives, have a good track record of actually bringing about full and lasting remission in Crohn’s disease.
May 2008 – Hot on the heels of the surgeon’s letter, which Hannah’s parents had waited 10 months since the original agreement to do MRI investigation, another letter arrived from the same hospital Medical Director as before, acknowledging that a referral was in motion, but still badgering Hannah’s parents for a meeting and making threats about "legal obligations to the provision of care and the protection of children". This letter was copied to Senior people at the other hospital in the Trust with no respect for the confidentiality of Hannah’s information.
This placed yet more stress on Hannah’s family to respond to yet another letter (however, the majority of the letters that the family had previously sent to the hospital had never been responded to!). The family’s reply stated many of the deficiencies of service from the current medical team in terms of their conduct and capability, made it clear that the referral was in motion and asked once again that the badgering and harassment stop.
In the meantime, Hannah continued to respond well to the homeopathic treatment, eating well, and sitting her SATs in full. She was in year 6 Primary School and good SAT results would help her get in the right stream at Secondary School. Hannah got some good news also that she had been accepted to the Secondary School of her choice. The whole family were delighted.
Hannah’s parents had also learnt a harsh lesson about placing too much faith and trust in Orthodox medicine which clearly didn’t have the answers for Crohn’s disease. They started to embrace more of the alternatives that had helped Sarah to make a full recovery.
Hannah’s parents ordered the same Aloe Vera drinking gel and Glyconutrient that Sarah had taken to get well. Towards the end of May 2008, they also added a probiotic tablet once a day, containing 6 "good bacteria".
June 2008 - After only a month on taking all Sarah’s alternatives plus the Probiotic6 and homeopathy, Hannah reported that she was feeling much better and increasingly so, day by day, after only a short space of time on all the alternatives together. She is no longer experiencing any Crohn’s symptoms, has been completely off the steroids 3 months and completely off Azathioprine 2 ½ months. her achiness in her joints caused by the steroids and discomfort in her cartilage caused by the Metronidozole have improved greatly since she started taking all the alternatives also!!!
Why Are The Alternatives Working For Hannah Where Standard Protocols Don’t Work?
Aloe, Propolis and Glyconutrients all have a strong, positive effect, the science tells us, on rebuilding a strong, healthy immune system. The Probiotics provide additional help by "crowding out" the bad bacteria in the gut with good bacteria.
Aloe, Propolis and Glyconutrients all have very special nutritional compounds explained elsewhere in this website which enable, over time, the immune system to take back control of the situation.
Hannah and her parents have no doubt that her illness came from contaminated dairy produce. Hannah was a big fan of children’s yogurts right through her childhood and has almost certainly been exposed to significant amounts of MAP from an early age. The proof of this is that Hannah’s Grandma has pictures of her at 5 years old with the same Erythema Nodosum marks on her legs that reappeared 5 years later when she had her first Crohn’s flare.
The MAP incubated for at least 5 years in Hannah’s body before triggering the first flare. Hannah’s parents allowed Hannah to eat these yogurts through her childhood in the belief that because they were pasteurised, they were safe. With the alarming increase of Crohn’s disease in children, we know that any dairy product that has not been thoroughly cooked or boiled may not be safe.
Hannah and her parents are very hopeful that the Crohn’s vaccine will come to market as soon as possible for those who don’t have time/money on their side to explore the alternatives.
I would like to thank Hannah's parents for writing their daughter's story so far, for this Crohns campaign & this website, having all been through so much stress & only what I could term a complete nightmare, in trying to protect their daughter and give her the best possibility of good health and a chance in life, certainly not with the help of those in the medical world, that should know far better.
Long may Hannah's health improve, for the future, and for the quality of all your lives, always here to Help, Support, Info & Advise......
Picture Below Shows A Crohn's Sufferer
With Erythema Nodosum.
Hannah's Story Update @ August 2008.
August 2008 - Update.
Hannah was referred to an excellent new Consultant at Guy’s and St.Thomas’ hospital in June 2008 as a result of Hannah’s parents making a request in writing to Hannah’s GP. In parallel, Hannah’s parents complained to a number of official bodies about the poor standard of care, lack of expertise and appalling attitude of the previous medical team at Harrogate Hospital and Leeds General Infirmary (Hannah’s parents are still battling to get Hannah’s full and complete medical records sent through to them as they are entitled to under the Data Protection Act. They still haven’t received Hannah’s MRI pictures on disc as requested nor have they received the pathology reports from all the blood tests that were taken through 2007 and early 2008 at Harrogate hospital).
Hannah’s new Consultant displayed a totally different attitude to Hannah, speaking to her as a person, asking all the right questions and making some basic examinations and observations. He was obviously an expert in his field and was able to instil confidence and trust in Hannah and her family. From this he was able to confirm that Hannah did not in fact need surgery and explained clearly the circumstances where surgery does become necessary. He also quickly identified what had gone wrong with Hannah’s previous treatment plan. He explained that the medicines Hannah had been given weren’t compatible with her and weren’t given in the correct dosage for them to be effective. He prescribed a new medicine in the correct dose that he felt confident would be compatible with Hannah based on her clinical data coupled with his knowledge of the latest research in the field of Crohn’s.
Hannah’s Consultant had no objections to the alternatives that Hannah was taking. Hannah’s parents believe that the alternatives spared Hannah from another flare up between transitioning medical teams, which the old medical team were sitting back waiting for so they could threaten “child protection” again and railroad Hannah into disfiguring surgery that would not alter the long term course of her disease. (In fact, Hannah’s parents know a lady locally with Crohn’s disease that went for surgery at LGI, had a colostomy bag fitted, and the disease raged on regardless, she now has three colostomy bags and an external fistula the size of an orange, which they can’t operate on because she has had a heart attack and has had a stent. At her disability hearing, when asked whether she had been offered any medication, she said no. The panel were surprised and commented that really she should have been offered medication for her condition. Obviously too much surgery profit from butchery at LGI and now children aren’t off limits with this sick agenda).
Although the alternatives had helped Hannah, she still had what the Consultant described as grumbling Crohn’s and that to leave things like that would not be in Hannah’s long term health interests. Because Hannah is 11 years old and at a key stage in her development in terms of growth and puberty, it was essential to get her inflammation levels right down quickly so that she could start to grow fully, return to a normal weight quickly and have full energy ready for starting at a demanding Grammar School in September. The Consultant identified very quickly that Hannah was very low on Iron and therefore her haemoglobin was low. He started Hannah on a course of liquid iron supplement that is well tolerated and the correct dose of an Immunosuppressant, 6 Mercaptapurine, for her weight. In only five weeks, Hannah’s inflammation levels have returned to very near the normal level, Hannah’s haemoglobin count has raised significantly, she has put on half a stone in weight in only three weeks, has bags of energy and is now looking forward to starting secondary school full time. This is an amazingly quick response as on average 6MP takes around 4 months to take its full effect.
In Hannah’s case, Hannah’s parents found that natural alternatives and the right orthodox medicines can be complementary and that in Hannah’s case, they had to opt for both approaches in order to get Hannah back on track quickly so that she could develop physically through these key formative years.
Hannah’s Consultant was also really considerate in setting up regular blood tests at the local surgery after school instead of having to take days off school to sit in hospital waiting rooms.
The key lesson is FIND A REAL EXPERT IN CROHN’S!
The NHS has some brilliant people and it has some quacks, i.e. people who masquerade as experts in a certain field when they are not. Particularly with Crohn’s in children, the NHS system in the UK is that they go to see a Paediatrician who is a generalist with no real expertise or specialisation in complicated diseases like Crohn’s. They in turn hand the child off to other Peadiatric Consultants and Surgeons who again don’t have the focussed expertise and in the case of surgeons, some have a very narrow view of the world and think cutting into people can solve everything. In diseases like Crohn’s that aren’t properly understood outside a small group of real experts, they can get away with this attitude as well. One can only hope that systems and controls can be put in place within the NHS to protect especially children from unnecessary and inappropriate surgery from fee hungry people.
" Thanks Again For This Honest Detailed Update On Hannah From Her Parents, I am so glad that she is doing so well, this is really excellent news................Tim Page."
Hannah's Update 29th September To December 2008 Ongoing.
29th September 2008 - Update.
Hannah is doing great; loads of energy, doing long bike rides with Mum and Dad. On 28th July, first day of her summer holiday in Cyprus , where they were staying with friends, Hannah weighed 4 stone 6 pounds and her haemoglobin was 7.6. It was at this time that she started with her new doctor’s treatment plan. Today she weighs 5 stone 5 pounds, a gain of 13lbs in only 2 months, and she now looks totally normal in weight and health compared with her school mates. The nurse at the GP surgery who took her regular blood test recently commented how much better she is looking. She’s loving her new school and is in very good spirits.
Whilst Hannah has got better with her new doctor (who incidentally is working with the Professor on the development of the anti-MAP Crohn’s vaccine), Hannah’s parents have had to fight a long hard battle once again to get access to Hannah’s medical records from the previous two hospitals that they used to deal with.
They were told by Harrogate hospital initially that all records came through Leeds, so they filled in one Access To Health form for Leeds , then waited. After a few weeks, some "medical records" came through the post for their daughter Hannah. Looking through the documentation that was sent, it seemed very incomplete, comprising mainly correspondence between doctors plus two MRI report summaries and some largely illegible clinical notes. However, the most important clinical / scientific data from all the tests Hannah had undertaken (giving Inflammatory markers, Iron deficiency levels, haemoglobin, blood pressure, TB X-Ray, Urine tests etc) plus the actual MRI pictures on disc were all missing.
Hannah’s parents emailed the Access To Health supervisor at Leeds stating that the scientific test data may be needed by Hannah’s new Consultant at Guy’s Hospital, London and full and complete records were required. The one thing they were very efficient in sending Hannah’s parents however was a remittance advice for £26.20 for the information sent (a few photocopies) and asked them to sign and return a form that the data protection act * access to health records * had been complied with.
Hannah’s parents replied that once they had received the full clinical data from all of Hannah’s tests (blood, blood pressure, urine and Xray) plus the MRI pictures on disc, then they would be happy to send payment and acknowledge that the data protection act has been complied with. More time passed but the records were still not forthcoming and the 40 day limit within which Access To Health are obliged to provide medical records had now been exceeded.
After more chasing a few blood test pathology reports came through the post but only the most recent ones. Hannah’s parents pointed out that there were still 14 months of pathology reports missing and that they still had not received the MRI pictures on computer disc. It was at that point that Access To Health tried to argue that the MRI discs had only been requested recently, but Hannah’s parent’s pointed out that the box marked X-Rays had been ticked on the original form. Leeds Access To Health also turned round after many weeks of waiting and said that many of the records Hannah’s parents wanted were held by the other hospital, Harrogate, and that Hannah’s parents would have to fill in a separate Access To Health form to have them sent from Harrogate.
It was becoming clear that this Access To Health department really wasn’t comfortable sharing full and complete health records with patients, irrespective of what the law says, irrespective of the individual’s rights and irrespective of the fact that a referral had taken place and irrespective of the fact that it was only reasonable to get the full and complete records so as to be able to discuss clinical issues with Hannah’s new team.
Hannah’s parents at this point, got their local MP involved again (who had been very helpful in getting the referral through to Guy’s and St.Thomas’ hospital earlier in the year). The local MP wrote to the Chief Executives of both hospitals, LGI and Harrogate , and it was only after that that things got moving. Eventually the MRI discs arrived from LGI, but well outside the 40 day rules that Access To Health are supposed to abide by, and of course a chasing reminder to pay their invoice!!!
Hannah’s parents then had to fill in a new Access To Health form (with a £15 administration fee) to receive all the records that were still missing and supposedly held by the other hospital. They complained to the Harrogate Access To Health administrator that they had already shelled out a good sum of money for records from Leeds General Infirmary. Now there was a £15 admin charge just for submitting a new form plus whatever Harrogate wanted to charge on top for the records. The total cost of getting access to health records should not exceed £50. As these records were for a child and related to a hospital referral and as the NHS is supposed to be free at the point of access, Hannah’s parents couldn’t understand why they were having to dole out money hand over fist to access a most basic NHS service.
Fortunately, Harrogate hospital saw reason, perhaps because the Chief Executive had now got involved, and agreed to waive any further charges and did in fact deliver the remaining medical records reasonably quickly. The Chief Executive also wrote the MP a letter stating that Hannah’s GP had in fact requested the records a long time ago and that Harrogate Access To Health had faxed the Access To Health forms to the GP surgery. Whether the fax worked or not they’ll never know. This was reminiscent however of the time Hannah was trying to get a hospital referral to Guy’s and St. Thomas’, was experiencing the usual delays that time as well, and only after the local MP had got involved did the hospital referral letter appear at the GP’s which had "accidentally" been left on a fax machine for 8 days! You can draw your own conclusions. Hospital Trusts who have enjoyed cosy little enclaves and local monopoly of people’s health do not like the new Choice programme that has come into force giving patients the right to go elsewhere.
Hannah’s parents finally were able to study Hannah’s records and immediately they could see from the blood test pathology reports that Hannah’s haemoglobin had been low for over a year!!! under the "care" of the Paediatrician at Harrogate Hospital . Many times Hannah’s parents had questioned the need for an Iron Supplement for Hannah with the Harrogate Paediatrician and always the reply came that she wasn’t anaemic and didn’t need it.
Iron deficiency leads to anaemia and reduced haemoglobin, reducing oxygen absorption and leaving the patient feeling tired and listless all the time, hardly able to do anything physical. Hannah missed 60% of school during a period of 14 months under this Harrogate hospital Paediatrician and it was clear that her energy levels could have been addressed if the haemoglobin count had been raised through Iron supplements.
It was only right at the very end when Hannah’s parents had stated that they had lost confidence in the current medical team and wanted a referral that the Harrogate Paediatrician put in a letter "Hannah is anaemic and progressively so". She knew all along but was allowing Hannah to struggle to break her down for the surgery agenda.
The reader may find some of this hard to believe, like a paranoid conspiracy theory, but then the bombshell landed. Hannah’s parents found the following letter in her records where the Harrogate Hospital Paediatrician was actively trying to scupper Hannah’s referral to another hospital outside of the Harrogate trust and in so doing was deliberately undermining the NHS Choice programme that the Government had brought in place since April 1st 2008.
And furthermore, the following letter reveals the underhanded skulduggery of trying to fix the 2nd opinion with someone of Harrogate Trust’s choice and tie this in with Child Protection. Utterly disgraceful, this doctor should be struck off, but nothing will get done about it and she will go on to hurt other children and threaten and bully other already distressed families with an arrogance exceeded only by ignorance. Read the letter below and judge for yourselves. (Names have been covered over to protect Hannah’s GP who is innocent in all of this and did not yield to this attempt at coercion and drove the referral through regardless).
Hannah’s parents view is, the letter below is evidence of both illegal and unethical behaviour. It is a flagrant attempt to obstruct and derail Hannah’s legal rights to a referral to a doctor of their choosing outside the Harrogate Trust area via Hannah’s GP.
A Recent Letter From Hannah's Old Consultant Paediatrition To Hannah's Family Doctor.
" Please see my letter to Hannah's parents. They have been resisting conventional investigation and surgical treatment and seeking alternatives. I have sent this letter expecting they would still refuse anaesthetic etc, but find they have accepted. However, if they change their minds and start seeking a second opinion, please would you try not to get involved and simply let me know.
The Trust would arrange a second opinion and from the Child protection point of view see it as imperative that I try and keep abreast of any developments and arrange whatever might be necessary."
Crohn’s can be a matter of life and death if not treated correctly. Hannah’s parents had been trying since January 2008 to get Hannah referred to Guy’s & St. Thomas’ Hospital via this Paediatrician at Harrogate Hospital, because Guy’s and St. Thomas’ have a leading specialist in the UK for this condition. The Harrogate Paediatrician consistently ignored their requests and then sent this letter to Hannah’s GP. The Harrogate Paediatrician was clearly trying to obstruct Hannah’s access to the best care, even though she had admitted after a year of "treating" Hannah for Crohn’s that she was no expert whatsoever in the disease herself and clearly wasn’t getting results.
The delays caused by her obstructiveness in the referral process caused Hannah and the rest of the family unnecessary distress and suffering and it was only when a friend advised the family to request a referral direct from their GP that the referral process got moving & in no small part because of the involvement of their local MP at that time who wrote to the Chief Executive of Leeds General Infirmary.
As the Harrogate Paediatrician is ultimately an employee of the Government, there are clear grounds here for referring this matter to the relevant law enforcement agencies, but that would only introduce more stress and upset to the family and would not be in Hannah’s best interests, so another bad doctor gets away with it!!!
Hannah’s parents record the above details on Tim’s website to educate other parents who might have to go through a similar process of "minefield clearance" if they ever want to find fair, proper, balanced and honest treatment for a child with Crohn’s. If you don’t get your child to a real Crohn’s expert in the first instance (and there truly aren’t many of them) then you could be in for a total nightmare.
Finally and most importantly….
Hannah is loving her new school and her attendance has been excellent since start of term. Her energy levels are high with plenty left over after school for homework/calling for her friends. Hannah is fully participating in PE at school and has signed up for swimming, netball and football. She can cope with long bike rides and walks no problem. No longer complains of the (steroid related) aches and pains in joints she used to have. Pallor seems completely normal now. Muscle mass returned well to legs and torso. Toilet visits in night are rare; eating normally, 3 meals a day.
In many ways Hannah seems better now than before her illness was diagnosed. Hannah had Erythema Nodosum marks on her legs at 4 years old so has probably been fighting the MAP for years before it flared at 10 years old. Hannah turns 12 this week. Not many 12 years olds have witnessed or experienced so many things at such a young age nor have had to show such amazing courage to battle through the ups and downs of inadequate doctors.
Update 1st October.
Hannah's Blood tests now show :
The inflammatory markers are normal and the iron levels are coming up - still needs to continue the iron. The 6-Mercaptopurine markers are fine - ie no harm on the white blood count.
October 2008 Update.
After escalations again via their MP to both Harrogate and Leeds Hospital Chief Executives, finally all the records came including the MRI pictures. Several things were quite clear; Hannah’s haemoglobin was low throughout the 14 months under their care and nothing was done about it; the CRP inflammation readings were up, down and all over the place which suggest that none of the medications were really tackling “the underlying problem” yet for many months the Paediatrician wrote to the GP repeatedly stating that Hannah was well. Looking at the MRI pictures, what is clear is the sheer complexity of the abdominal and pelvic area and how fraught with risk surgery is and how illogical a course of action, given the bacterial source of the disease, for anything other than clearing a severe blockage.
There were active steps taken to try to block Hannah’s referral to Guy’s and St. Thomas ’ by the old medical team. The referral letter “sat on a fax machine” for eight days. Consultant and Surgeon both recommended 50mg Azathioprine but Paediatrician would never allow more than 25mg rendering the dosage ineffective. There was an active Child Protection agenda going on in the background and derogatory stereotyping of Hannah’s parents going back and forwards in letters and notes. A surgeon’s letter to the Paediatrician stated that surgery was not a curative for Crohn’s and that surgery should be as minimal as possible, and medical therapy would be great if it could be made to work, contradicted by another letter a couple of months later by the same surgeon stating Stoma/Colostomy was the only likely outcome “to work”. Suffice it to say that Hannah’s parents feel absolutely vindicated in all the actions they took to safeguard Hannah, they have the evidence to prove it, and they’ll try to now look forward not back.
In the meantime Hannah’s new consultant at Guy’s and St. Thomas ’ is still waiting for the MRI pictures to be sent across from Leeds General Infirmary. Something is seriously wrong with large parts of the NHS morally, ethically, organisationally, too many doctors have become corrupted by the vested interests and manipulation of the drug companies.
*** Thanks Again To Hannah's Parents for sharing all this with us all, for this Update. It just shows what steps these so called professionals will stoop to, to get their IBD sufferers into surgery or on their drugs, backed by the large drug companies. Often these cocktails of perscribed drugs fail time & time again, with harsh side effects to the IBD sufferer. Playing a God like figure, in arrogant mode, can cost lives, and has done.....Tim Page @ TCCC.UK. ***
November 2008 Update.
Hannah still takes Aloe every morning in addition to her small amount of 6MP (1.5ml/15mg) and Iron supplement daily. When she picks up a little bug or cold, we add a few drops of Propolis for a few days. Works very well and a good alternative to antibiotics.
Things have been back to a fully normal life with Hannah for 3 months now. Colour, weight, energy, quality of life all v.good. When we started with Jeremy, we weren’t even expecting to see any results until Christmas. It’s amazing how rapid the change has been.
Further Updates To Follow, Please Check Back.......
Hannah's Story Continued Into 2009.....
HANNAH UPDATE - APRIL 2009
After 6-7 months of doing much better on the 6Mecaptopurine, Hannah unfortunately had a relapse. During this time, Hannah’s parents decided not to administer any of the Alternatives because they wanted to observe if the 6Mercaptopurine could control the disease on its own. As is so often the case with monotherapy, the MAP adapts fairly quickly and becomes resistant to single drugs like 6MP, hence their beneficial effect is so often only temporary. MAP are highly resistant bacteria which are very adept at overcoming a one dimensional therapeutic approach.
Hannah’s CRP inflammation markers only came down to near normal levels one time, about a month after starting the 6MP, but after that, her CRP rose gradually each month, although she continued to do well symptomatically and continued at school for a long time. However, when CRP inflammation readings keep going up, trouble usually follows eventually. An increase in the dosage of 6MP was attempted but this only accelerated a reappearance of symptoms. The main symptoms this time were weight loss and tiredness which resulted in Hannah missing the Summer term at school.
Finally, after jumping through so many of the NHS’s hoops with protocols that are proven time and again not to work or only partially / temporarily work, Hannah was prescribed Rifabutin and Clarithromycin. Hannah’s parents had implored her old medical team to give her Rifabutin and Clarithromycin 20 months earlier, through many letters and meetings, but the requests were ignored and dismissed, despite that medical team being provided with a wealth of scientific evidence supporting the benefits of such a therapy.
After about two weeks on the new medicine, the fistulae and abscesses opened up and resolved themselves with a large discharge of puss. Hannah started to show some signs of improvement, although because Rifabutin and Clarithromycin are attacking the MAP pathogen at the root of Crohn’s disease, progress was expected to be slow and deliberate, but producing better long term results. As complimentary therapy, Hannah also started taking two of the naturals again in capsule form, Propolis and Ambrotose Glyconutrients. Her condition improved rapidly; the MAP could be seen clearly going on the run, forming red pustules at the skin, all over her body, especially near many of her joints, trying to escape the intracellular bactericides that she was taking.
HANNAH UPDATE - JUNE 2009
Although Hannah’s weight was still low, the disease process had been arrested, the inflammatory markers had come down much lower than previously witnessed, normal appetite had resumed, she was gaining weight and energy. Her symptoms were clearly improving and she was showing no adverse side effects from the medicine, except a slight fake tan, an expected side effect, which friends complemented Hannah on. Everything was proceeding in the right direction again, supported by the Propolis and Glyconutrient Naturals also.
HANNAH UPDATE - JULY 2009
Hannah’s blood tests were now looking really excellent. The viscosity was a little raised but the CRP had come down to within normal limits, for the very first time since Hannah was diagnosed with Crohn’s disease 3 years earlier. This fitted with her clinical progress which has been very good on the Rifabutin and Clarithromycin and her weight is still continuing to rise steadily. Hannah had now gain a whole stone in weight over the past 4 months, energy levels were fully normal again, out playing with her friends and enjoying the Summer holidays. There was mild isolated hyperbilirubinaemia which was of no concern as the other liver function tests were normal.
HANNAH UPDATE – SEPTEMBER 2009
Hannah’s blood test results were really excellent again, the best ever. Her inflammatory markers were well within the normal range. She has mild leukopaenia, which her Consultant often sees on Rifabutin, but this is not of any concern. Hannah remains moderately iron deficient with a haemoglobin of 11.2 and low iron and therefore is continuing on iron supplementation, but hopefully this should eventually correct.
To play things safe through this transitionary period to the new medicines, Hannah has continued to take the 6Mercaptopurine, however the hope is that she can come off this soon as it is Cytotoxic (toxic to cells) which Hannah and her parents don’t feel is ideal when she is in her key growth years. At just turned 13 years old she is wanting to achieve some catch-up growth. Hannah had a great summer and is feeling well, with no symtoms of active disease. Hannah is back at school, enjoying a full school schedule again and has gained another half a stone in weight since July. She now weighs more than she has ever weighed since being diagnosed with Crohn’s 3 years ago and has a level of wellness about her that was never seen from the drinks, steroids, azathioprine, metronidozole or 6Mercaptopurine that were tried as part of the NHS “standard protocol”.
The current therapy will most likely need to continue for approximately 3 years to eradicate the deeply embedded MAP infection from Hannah’s body which is the proven cause of Crohn’s disease, having met the standards of Koch’s postulate, the accepted scientific method for proving infectious disease causation.
In 3 years, Hannah will be 16 years old. It is essential that the vaccine developed by Professor John Hermon-Taylor be pushed forward now with support from all sides as Crohn’s will soon escalate into pandemic proportions just as Johne’s disease has done in cattle. The MAP is getting smarter, stronger and more prevalent in our environment and the only viable answer for cattle and humans are vaccines. Hannah will never be able to stop looking over her shoulder in fear of this wretched disease until the vaccine is brought to market and made available to all. With up to 300,000 sufferers of Crohn’s in the UK currently, it’s time to dismiss Darwin theory of natural selection and survival of the fittest. We have to adapt like the MAP has learnt to adapt, using the science of medicine, to PUT A STOP TO THIS PANDEMIC.
By Hannah's Dad.
Hannah's Update For November 2009.
Hannah Update - November 2009
Current NHS medication:
1. Rifabutin 150g twice daily
2. Clarithromycin 250mg twice daily
3. 6 Mercaptopurine 15mg daily
4. Sytron Iron supplement reduced to 5mls once daily
Natural / Alternative supplements:
5. Glyconutrient tablet twice daily
6. Propolis tablet twice daily
7. Multi-vitamin twice daily
Current weight: 6stone 1lb
Hannah is doing well on her current regime and at this stage her consultant sees no reason to change anything. The only change he suggested was that she reduces her iron to once daily because there is haematological evidence of correction in her iron stores. She still has very marginal anaemia, probably more associated with chronic disorder than iron deficiency. She is growing well and gaining weight and has good energy. She also has good nutitional intake.
Her most recent 6MP metabolite levels show a therapeutic TGN level of 202. As the 6MP is adjunctive therapy, her Consultant does not see any reason to increase the dose. Hannah is clearly responding well to the Rifabutin and Clarithromycin and we now envisage this being her treatment for the next three years.
Hannah has recently decided to start Physical Education again at school with no prompting from her parents, and is no longer reporting the joint ache that she used to experience. Hannah's experiences with doctors and hospitals have now encouraged her to study to become a doctor in later life - she realises what an important difference a doctor can make to a person's life when they are at the top of their field.
By Hannah's Dad.
Hannah's Story Update December 2009.
Update - December 2009
Hannah's most recent blood test results show that her inflammatory markers are within the normal range again. This is the third set of blood results where they are normal. Hannah's weight on the doctors scales recently was 42kg which they converted to 6st 8 ½ lb. Hannah has gained over two stone this year and is also showing good signs of height growth again. She has been taking part in sports at school for the past 5/6 weeks and thoroughly enjoying it, and also travelling into school on the bus. Her school attendance has been normal since the Summer. As well as the Rifabutin, Clarithromycin and 6MP, Hannah also continues to take the natural supplements, Bee Propolis tablets (2 per day) and Ambrotose Glyconutrient tablets (2 per day).
By Hannah's Dad.
Hannah's Story Update July 2010.
HANNAH UPDATE – JULY 2010 – update from Hannah’s Mum and Dad
Hannah has just completed a very successful year at School. Her attendance for the year was 86.29% which is well above the school attendance average. She also received eight end of year awards for her schoolwork and a letter from the school confirming that her end of year report scores place her in the top 10% of students in the year group. This represents an excellent acceleration in progress this year, considering the time she had off school in the previous three years. Hannah’s energy levels have also been outstanding, getting up at 6.30am every morning, taking herself to school on the bus, participating in PE and sports day, with always plenty of energy at the end of the day to play out with her friends and ride her bike.
Hannah was weighed at the Doctors today (21/07/2010) and measured 50Kgs or 7stone 12lbs. (In May 2009, she was only 4stone 4lbs, so has gained 3 ½ stone!!!). Needless to say, Hannah’s appetite has been excellent over the past year. Hannah’s height was also measured by the nurse and is roughly 150cms or 4ft 11inches. Her body mass index was 22.4 which is right in the middle of the normal range.
Hannah has proved to be an excellent responder to the Rifabutin and Clarithromycin and has demonstrated no sign or symptom of Crohns disease for over a full year now. In addition to the Rifabutin and Clarithromycin, Hannah still takes 1.5ml of 6MP daily as adjunctive therapy and also some natural supplements (2 Bee Propolis tablets, twice daily; 1 Ambrotose glyconutrient tablet twice daily; and 1 multivitamin tablet twice daily). The Rifabutin and Clarithromycin has been extremely well tolerated by Hannah with no unpleasant side effects at all. The only visible side effect is that this medication makes Hannah’s skin appear tanned, which is no hardship whatsoever.
Thanks to Tim Page, Professor Hermon-Taylor and Jeremy Sanderson who all played a key role in enabling Hannah to get this well, through their help, advice and guidance. Hannah’s parents are tired from the ordeal of the past 3 years but the results have been worth it and Hannah’s Dad is taking time off work over the Summer to be with Hannah and the rest of the family and enjoy some quality family time.
Helene and Chris
Hannah's Update For November 2010.
– Update on Hannah’s Progress From Her Parents
Hannah is 14yrs 1mth old now. In recent blood tests taken this month, Hannah’s CRP is 5, which means her inflammation markers remain well within the normal range (0-10). Her weight is now 8st 5lbs, and she has grown 4cm in last 3 ½ months. She is now 5ft 1inch tall. Her energy, appetite and school attendance are all 100%. She stopped taking the Ambrotose a couple of months ago, to streamline the number of tablets she takes, but still takes 4 Propolis tablets per day in addition to the NHS meds (Rifabutin,Clarithromycin).
Other key indicators in her blood pathology report are also looking extremely good.
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