Cystic fibrosis sufferer told he will not be awarded PIP by DWP

Source: Warrington Guardian
Date: Saturday, 1 April 2017
Written by: Adam Everett

Peter Trengove, who has Cystic Fibrosis, has been told that he will not be awarded Personal Independence Payments by the Department for Work and Pensions.

A CYSTIC FIBROSIS sufferer whose lungs function at as low as 31 per cent capacity has been told that benefits he receives in order to help pay with healthcare costs will be stopped.

Peter Trengove from Woolston nearly died at three days old because of the condition, which makes it difficult for sufferers to breathe and digest food.

Cystic Fibrosis also claimed the life of Peter’s older brother when he was aged six.

The 37-year-old had received Disability Living Allowance in order to help to pay care costs, but this system is currently being replaced by Personal Independence Payments as the Department for Work and Pensions believes it is ‘outdated’.

Peter, of Cynthia Avenue, received noticed on New Year’s Eve that he would have to attend an assessment interview as part of his PIP application, with forms on how Cystic Fibrosis affects his day-to-day life taking three hours to fill out.

On Saturday, Peter, whose lungs function at between 31 and 45 per cent capacity, was told that his DLA will end next month and that he will not be awarded PIP. He said: “According to the unqualified professionals at the DWP, Cystic Fibrosis isn’t a disability and has no effect on the sufferer at all.

“I was informed by the assessor that the decision would not be based on the assessment but on the written evidence given by my consultant – this was something I was relieved about because the assessor saw me on a good day.

“The decision cannot be based on one hour spent with a Cystic Fibrosis patient, which is why the decision-makers should be focussing more on the evidence given by the consultant.

“The assessor claimed I can walk 200m – however, no physical evidence was given then I can do this and the assumption was made based on me walking from the waiting room to the assessor’s office, which is less than 5m.”

Evidence that Peter believes his assessor disregarded includes medical notes on a chest infection in October that took three months to treat and a further month to recover from.

Peter had used his DLA for health costs including prescriptions, travel to specialists clinics a 40-mile round trip away and the cost of a Personal Trainer who helps to keep his lungs working as well as possible.

He is now appealing the decision but feels his health has been affected by the PIP assessment process and the subsequent cut in payments.

Peter added: “Since the assessment, I’ve had bad days, which mainly includes not leaving my house unless I really have to in fear of exposure to illness, plus I’ve had no motivation.

“I even have to force myself to get ready to go to the gym because I know I’ll basically become ill again if I don’t go.”

“Whether I will be motivated tomorrow with the weight of my PIP application outcome lying heavy on my shoulders is a question yet to be answered.

“The only hope I have at present is that by appealing the decision, this will result in the answer I had hoped for on this occasion.”

A spokesman for the DWP said: “Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.

“Anyone that disagrees with a decision can ask us to look at it again and if they’re still unhappy with it they can appeal to an independent tribunal.”

Transfer from DLA to PIP 3

Originally published on Tuesday, 28 March 2017

Update on my fight against DWP’s decision on my PIP application:

Today (Tuesday, 28 March 2017) I received an email from the CF Trust help desk who replied:

“Hi Peter,

Thank you for contacting the Cystic Fibrosis Trust helpline.

You mention that you feel because CF can be a hidden disability, or one which may not be obvious from the appearance of someone, that other people may perceive it differently or negatively. You say that these people may not see the daily struggles that someone with CF might face, and therefore may make assumptions or judgements.

I’m so sorry to hear that you feel this is an attitude which extends to both the general public and to professionals in the DWP. You mention that this all began when you were asked to move from DLA to PIP, and that you became anxious at this point, having heard worrying stories from others with CF who had gone through the process of applying for PIP. It sounds like the timing of the letter also added stress, as you weren’t able to call the DWP until some days later, and technical problems made it difficult to get through for some time.

You mentioned that the process of filling out the form was time consuming and frightening, in that there was lots about your health and about CF that you hadn’t necessarily thought much about until you had to write it down. We too recognise that it can be really difficult to put the difficulties and challenges faced down on paper, and can involve having to focus on things which you may not necessarily wish to think about or write about.

I’m so sorry to hear that while you felt the medical assessment had gone well, you were told that you would not be awarded PIP. I can hear your concern that the medical evidence you submitted wasn’t taken into account when looking at your application and that the DWP haven’t read the information properly.

You mention that in the time since the decision your health has been impacted, you have lost motivation and your appetite, and are struggling with panic attacks and anxiety – it sounds like things have been really difficult recently, and I want to assure you that we are here to support you however we can. We recognise that the process can be a real challenge, as the PIP criteria often may not seem easily applicable to all aspects of CF, and many people who are eligible do have to dispute decisions to get an award eventually. It’s something that we are working on policy-wise, as well as trying to make sure that people going through the process have as much advice and support as possible.

You mention that you have until 16th April to dispute the decision- would you like to challenge it? I have attached some information on asking for a Mandatory Reconsideration for you to have a look at if you wish. Sangeeta, our Welfare and Rights Advisor, can also support and advise you- would you like us to put you in touch with her?

I can hear that this is a really difficult time, and if you ever need to talk, we’re here to listen. You can give us a call any time between 9am-5pm, Monday to Friday, on 0300 373 1000 or 020 7795 2184, or send us an email on helpline@cysticfibrosis.org.uk.

Best wishes”

A copy of all the guides I’ve used for making a PIP claim, information passed to me from the CF Trust and also a template letter requesting a Mandatory Reconsideration can be downloaded here.

PLEASE NOTE: the documents are guides to give you an idea what to do during PIP claims.

Please refer to your Social Worker for assistance.

Please don’t attempt to do anything independently as the Social Worker will have processes you may have overlooked.

Transfer from DLA to PIP 2

Originally published on Monday, 27 March 2017

Update on my fight against DWP’s decision on my PIP application:

Today (Monday, 27 March 2017) I spent 2 hours and 30 minutes with my Social Worker discussing and taking action on the decision made by the DWP to deny me my PIP claim.

Upon reading the letter I had received dated 20 March 2017, my Social Worker agreed it was quite clear the decision-maker based the outcome of my claim on the 1-hour interview I had with the assessor.

I had an email from Adam Everett at the Warrington Guardian about the email I sent on Saturday evening.

In the past, I have made contact with Adam on a regular basis with progress on past medical trials aimed to improve the quality of life in CF.

Adam, who specialises in the health topics for the local newspaper, reacted with shock by the outcome of my PIP claim.

Here is a quote Adam managed to get from the DWP Press Office about how the outcome of a PIP claim is made.

“Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.

Anyone that disagrees with a decision can ask us to look at it again, and if they’re still unhappy with it they can appeal to an independent tribunal.”

Below is a scanned copy (using Optical Character Recognition) of the letter with added observations that is evident the decision maker did not look at the evidence provided.

How I made my decision

I looked at all of the information available to me, including:

  • the “How your disability affects you” form
  • the information provided by the letter from your consultant
  • the information provided by the letter from your consultant
  • the information provided by the letter from your consultant
  • the information provided by the letter from your consultant
  • the information provided by the letter from your consultant

This told me the type of help, and how much help you need.

I used this information to look at whether you can carry out 12 activities and the amount of help you need. A score is given for each of these.

There are 10 activities for the daily living part of PIP and 2 for the mobility part.

If your total score for the daily living activities is between 8 and 11 you’ll be awarded the standard rate. If your score is 12 or more you’ll be rewarded the enhanced rate. This is the same for mobility activities.

Daily Living – for the 10 daily living activities you scored:

Preparing food (scored out of 8)
You can prepare and cook a simple meal unaided – 0

In my application I stated that when in a low mood or unwell, I lose my appetite or need help preparing meals. I stated my partner helps with meal preparation, which encourages me to eat. Otherwise I would mess meals.

At the consultation with the assessor I stated that my partner, who was there with me, makes a majority of the meals due to me not having any motivation as a result of my low moods.

Eating and drinking (scored out of 10)
You can eat and drink unaided – 0

In my application I stated that when in a low mood or unwell, I lose my appetite or need help preparing meals. I said that my diet is a very important part of my treatment for my condition and I need to eat regular meals and have to take a substantial amount of medication with meals to aid absorption.

When I am unwell and produce a great amount of sputum, this suppresses my appetite and I lack motivation to eat. Therefore I am constantly reminded by my partner to eat.

Managing your treatments (scored out of 8)
You can either manage medication/therapy or monitor your health condition unaided, or you don’t need to – 0

In my application I described how I use medical aids to help remind me what medication I need to take and at what time. I stated how my partner helps by making sure I have the required medication when we go out from the house.

I gave good examples the consequences I face should I miss a dose of medication i.e. stomach ache, diarrhea, heartburn, GORD issues, breathing issues and also result in me being more prone to infection.

I stated it can take up to 30 minutes to do treatment and if unwell can possibly take as much as 5 hours per day to do all my treatments.

I stated exercise is encouraged by my physiotherapist to help maintain lung function and that I get support with this.

I concluded that my high treatment burden affects my mood and my partner often prompts me to do my treatment.

Washing and bathing (scored out of 8)
You can wash and bathe unaided – 0

In my application I stated the importance of personal hygiene, daily washing and oral hygiene for preventing infection. Especially if I have been exposed to an unwell person, or if I’m on IV treatment.

I said I have a portacath used for IV access for antibiotics, and during IV treatment I struggle with personal care as a result of fatigue caused by the medication.

I stated I get help from another person to wash otherwise it would take me twice as long to wash if unaided.

Managing your toilet needs (scored out of 8)
You can manage your toilet needs or incontinence unaided – 0

In my application I stated I suffer from incontinence as a result of not taking my medication correctly or eating food that I unknowingly have intolerance to.

I stated my partner does the laundry and ironing at home as I find this a strain to do whether I am well or not.

I stated when on IV treatment I need to be close to a toilet more often due to high volume of liquid intake.

Dressing and undressing (scored out of 12)
You can dress and undress unaided – 0

In my application I stated that when unwell it takes me twice as long to get dressed due to having to rest as a result of breathlessness. I said I particularly have issues putting on socks and shoes due to the strain it has on my chest.

I concluded that when I’m having a bad day I don’t get dressed due to fatigue, breathlessness and chest tightness.

Communicating (scored out of 8)
You can express and understand verbal information unaided – 0

No information was given about communication as I have no issues here.

Reading (scored out of 8)
You can read and understand basic and complex written information either unaided or using glasses or contact lenses – 0

No information was given about communication as I have no issues here.

Mixing with other people (scored out of 8)
You can engage with other people unaided – 0

In my application I stated that due to being prone to chest infections, which easily damages my lungs, I said a simple cold could result in hospital admissions for IVs.

When I am on my IVs, I have no social life at all.

I said to avoid infection in order to preserve my lung function, I don’t often socialise in fear of coming into contact with infection whilst outside.

I concluded I find this frustrating and distressing because it limits my social life significantly.

Making budgeting decisions (scored out of 6)
You can manage complex budgeting decisions unaided – 0

I stated I have standing orders with my bank to make paying for house bills easier to manage.

Your total score for the daily living part of PIP is 0 points. This means I can’t reward you PIP for help with your daily living needs.

Mobility – for the 2 mobility activities you scored:

Planning and following a journey (scored out of 12)
You can plan and follow a route of a journey unaided – 0

In my application I stated I suffer a persistent cough, which can make me breathless and dizzy.

I said I have medication I take at particular times in the day and have suffered from bowel incontinence.

These cause me to feel overwhelmed and anxious, stopping me from going out without encouragement from another person.

I worry about missing medication whilst out, or not being able to get to the nearest toilet. Therefore I get concerned about visiting unfamiliar places and limits my social life.

Moving around (scored out of 12)
You can stand and then move more than 200 metres either aided or unaided – 0

In my application I stated that walking around shops no matter how big or small can be tiring and makes me breathless.

I always find a parking space as close to the entrance to shops as possible to do a small shop, or my partner does all the shopping if I am not well or in a low mood.

I stated that on a bad day I have not been able to walk more than 24 metres.

Your total score for the mobility part of PIP is 0 points. This means I can’t award you PIP for help with your mobility needs.

Now that you have seen a breakdown of what I put in my application, that this does not match the scores given or the decision made below.

My decision

I made my decision using information about your health condition or disability including details of any treatment, medication, test results and symptoms. This information is the best we have available and enough to decide how much help you need. As your needs vary, my decision is based on the help you need most days.

You said you can manage to communicate verbally, reading and understanding signs, symbols and words and making budgeting decisions. I agree you can manage these activities.

You said you have difficulties preparing food, taking nutrition, managing therapy or monitoring a health condition, washing and bathing, managing toilet needs or incontinence, dressing and undressing and engaging with other people face to face.

I have taken into account you have no physical restrictions, and although your condition can sometimes lead to hospital admissions however these have been infrequent.

Informal observations showed that you looked well with a normal complexion and appeared to be of an average build and did not look tired, and no signs of breathlessness were observed. You were found to have adequate memory and concentration and reported that you drive a car several times a week, which would suggest good cognition.

You did not appear anxious, withdrawn or agitated and reported that you mix with family and friends and had no problems engaging with the assessor.

You also stated that you are currently looking for employment.

In your social history, you said that you go to the gym about 3 times a week and use the bike for 10 minutes then spend up to 40 minutes on the weight for strength building.

You stated that you are not the incontinence nurse as you accidents on not for the majority of days, and have no input from the mental health services. I decided you can manage these activities unaided for the majority of days.

You said you have difficulty planning and following journeys. I have taken into account you have no cognitive or intellectual impairment. You drive an automatic car several times a week going to the gym, supermarket and visiting family and friends.

I have decided you can plan and follow the route of a journey unaided.

You said you also have difficulty moving around. I have taken into account you were observed to walk at a normal pace with a normal gait unaided and observed to rise from a chair unaided, and no breathlessness was observed, and you reported you to go to the gym about 3 times a week and used the bike for 10 minutes.

I decided you can stand and then move more than 200 metres for the majority of the days.

This is consistent with your medical history, your description of a typical day, informal observations at your face to face consultation, how you engaged with the assessor, the available evidence and your mental state examination results.

I cannot consider any help you need not covered by the activities for daily living and mobility, including being near to a toilet and laundry.

For more information about PIP go to www.gov.uk/pip

Yours sincerely

Diane Chennell

Any claims I made in my application were evident in the letters sent by my consultants.

As you can see in the response above, it is evident by what Diane Chennell has written that she based the decision on the 1 hour I spent with the assessor.

It is of mine and the Social Worker’s opinion Diane Chennell’s decision shows very clearly the application and evidence provided by my consultants were not looked at.

Transfer from DLA to PIP 1

Originally published on Saturday, 25 March 2017

Here is an article I wrote to the press in relation to my experience with my PIP application.

“Hi Adam

How are you doing?

In general, health-wise, things are as good as can be as expected given my condition.

However the topic I am writing to you about affects anyone with a disability, not just those with Cystic Fibrosis (CF).

As you are personally aware, I have previously written with news about CF drug trials that could lead to something hopeful, resulting in improved quality of life and possibly as close to a cure for this genetic disorder.

Like with any other illness, hope lies with these drug trials. However, there is a side to a certain type of disability that’s looked at with a frown. The main reason is these disabilities such as CF aren’t as obvious based on the general appearance of the sufferer. This is classed as a hidden disability.

I’ve lost count for the number of times I’ve heard a CF person, who has a blue badge, state they were challenged by the general public when they’ve parked in a disabled bay at the shops.

Most of these comments are taken with a pinch of salt due to the naivety of the challenger. We understand these people are not professional bodies in health care and therefore don’t see the effects CF has on the daily life of the sufferer with the treatment and hospital visits they go through.

So far I have mentioned how non-professional people look at those with CF and don’t understand what is happening in our world.

However as I and many other CF sufferers have found, the ignorance doesn’t just lie with the general public, but also those who claim they are qualified health professions. In this case, I am talking about those who work or represent the Department for Work & Pensions (DWP).

For me, it all began on Saturday, 31 December 2016 when I experienced that dreaded moment all disabled people have or will endure at some point. It was that moment when a brown envelope was posted through my letterbox containing the letter stating my Disability Living Allowance (DLA) was coming to an end in favour of the new Personal Independence Payment (PIP).

The letter set off my anxiety as I had heard so many bad experiences from fellow CF sufferers about their ordeals whilst applying for PIP.

The timing of receiving this letter on New Year’s Eve made things worse because with the New Year’s Bank Holiday commencing, I knew I had to wait until Tuesday, 2 January 2017 before I could telephone the DWP to start the application process for PIP.

Although I did my utmost best not to let this get to me, throughout the New Year’s Eve party I attended, I appeared to be coping on the outside, but my mind was working overtime about the application for PIP and bad experiences I’ve heard. I hoped I wouldn’t be another victim to the slander DWP provide in their reports about CF sufferers.

Tuesday, 2 January 2017 came and I started the process of applying for PIP by phoning DWP as instructed. I rang the number given in the letter at 10am and a computer voice told me to phone back in 4 hours whilst a technical issue was being fixed.

At 2pm I rang again. This time a male human voice asked if I could call back in another 2 hours due to the computer he was using not working.

At 4pm I rang once more. This time a female human voice was speaking to me. However, the quality of the telephone call was poor to the extent I had to ask her to speak loudly and slowly so I could hear her.

As confirmed by what the letter stated would happen in the telephone call, I was asked to confirm my personal details and agreed to a statement that was read out to me. I was told I would receive an application pack in the post.

Once the telephone call had ended, I rang my Social Worker at the CF specialist unit in Wythenshawe Hospital to let her know what had happened.

I was instructed that once the pack had arrived, to make an appointment with the Social Worker where I would receive help with the application.

The application pack arrived and I realised most of the evidence to support how CF affects my daily living was to include CF clinic letters, repeat prescription and a supporting letter from my Social Worker that gave an insight about how CF affects my daily living.

On Tuesday, 10 January 2017 I sat with my Social Worker who helped me complete the application form.

This took a total of 3 hours to complete due to the amount of information I had to include how my CF affects my day to day living and also mobility.

I never ever expected to write the answers I did. Not because they weren’t true. Everything I had written was very true. The reason why I never ever expected to write what I did is as a sufferer of CF, I have grown up with the symptoms and didn’t truly know until writing this application how I compared to a healthy person. Nor did I realise the extent in the seriousness of CF. Mainly because it’s something I never really stopped to think about.

All I knew from personal experience the importance of the treatment program prepared by the CF Care Team, which includes Doctors, Nurses, Social Workers, Psychologist, Physiotherapists, Diabetic Consultants, Pharmacists, Surgeons…the list goes on.

Although deep down I knew had I not taken the treatment program given I would not live a long life, I’ve never had to think about until putting it in writing as I did with the PIP application. If I am honest, having to discuss this with my Social Worker was the hardest realisation I had to face to the extent it frightened me resulting in me working as hard as I can to keep myself fit and healthy, which with a lung function of 41%, this isn’t easy.

With the application completed and sent with supporting evidence from the CF Care Team, I received a letter from DWP dated Monday, 20 February 2017 with my appointment for a consultation with a “Health Professional”.

The appointment date set was Tuesday, 28 February 2017, which I couldn’t attend due to an existing appointment at the CF clinic. Immediately I telephoned the DWP about this and the date was changed to Thursday, 9 March 2017.

I was encouraged to take a companion such as a relative, carer or friend for support. Luckily I did due to my anxiety. I was so anxious I thought I forgot to take relevant identification with me. Plus I was so nervous I never stopped talking.

As she greeted me, the assessor claimed to be in the nursing profession since 1991. The assessor commented on how I showed signs of anxiety and reassured me that most of the assessment would be based on what I wrote in my application. I was informed most of the decision making was based on information provided by the number of letters from my consultant, which was evidence to my health claims stated in my application.

During the assessment, I was constantly sidetracking during the interview and my companion brought me back to the topic we were talking about.

After the assessment, my companion and I felt the interview went really well. I was told by the assessor I would get the outcome of my application in the next 6 to 8 weeks.

Today, Saturday, 25 March 2017 I received a letter from DWP with the result of my application for PIP.

The letter states that PIP will not be awarded and that my DLA will come to an end.

DWP “looked at all of the information available including the ‘how your disability affects you’ form and the information provided by the letter from your consultant”, and the 10 activities for the daily living part of PIP and 2 for the mobility part, which include:

Daily Living

  • Preparing food
  • Eating and drinking
  • Managing your treatments
  • Washing and bathing
  • Managing your toilet needs
  • Dressing and undressing
  • Communicating
  • Reading
  • Mixing with other people
  • Making budgeting decisions

Mobility

  • Planning and following a journey
  • Moving around

All the scores for all of these have been a zero. Therefore according to the unqualified professionals at DWP, Cystic Fibrosis isn’t a disability and has no effect on the sufferer at all.

Part of the evidence given by the CF Care Team included a chest infection I had in October 2016 that took 3 months to treat and a further month to recover from. My lung function at best is about 45%. This reduced down to 31% when I was at my worst with the infection. Although this rose back up to 41% upon recovery and since rose again to 49% as a result of a new treatment, had I not been treated at all for this infection my life expectancy would have been affected quite considerably.

As you have probably realised from information given so far, the DWP haven’t based their decision on the letters, medical reports, etc the hospital provided. It is, in my opinion, the DWP haven’t read the evidence properly or at all. Otherwise, I would not have scored zero on any of the bullet points shown above.

I was informed by the assessor the decision would not be based on the assessment, but on the written evidence given by my consultant. This was something I was relieved on because the assessor saw me on a good day.

Since the assessment I’ve had bad days, which mainly includes not leaving my house unless I really have to in fear of exposure to illness. Plus I’ve had no motivation. I even have to force myself to get ready to go to the gym because I know I’ll basically become ill again if I don’t go.

Today I was to do a quick shop for mother’s day, but again had no motivation. All I wanted was to stay in the safety of my home. Whether I will be motivated tomorrow with the weight of my PIP application outcome lying heavy on my shoulders is a question yet to be answered.

The only hope I have at present is that by appealing the decision, this will result in the answer I had hoped on this occasion. I have until 16 April 2017 to do this before my DLA comes to an end. A benefit I used to cover health costs that comes as a result of having CF.

Peter Trengove”

Life with Cystic Fibrosis

Originally published on Tuesday, 28 February 2017

When I was young (I’m a 1980’s child), management of CF was primitive compared to how it is now.

Diet & Treatment
From what I remember, Creon wasn’t on the market until around 1985. However, there was another tablet that aided digestion, which wasn’t as powerful as Creon. As a result, fatty foods such as cake, crisps, biscuits, etc were foods to avoid in the CF diet. So the introduction of Creon came as a shock to me when I was allowed these types of food and although I am able to have these foods, I don’t really eat them due to not having much of a sweet tooth.

Over the years treatment has improved vastly, aiding a better quality of life and CF people living longer too.

Not only has treatment improved over the years, but also equipment used to administer them. With advances in technology, nebuliser equipment has become more compact and treatment taken through these have become quicker to take too.

Medical advances seem to be happening fast at the moment with all these promising drug trials.

OK not all trials work out as we hope, lessons from them are learnt for the next drug trial, so all is not lost.

Exercise
It was once believed exercise was bad for the lungs of CF patients based on the coughing fits caused as a result.

It was later realised coughing during exercise was down to the airways opening up as a result of deep breathes, which in turn improved the lung function.

Mix and match
Before segregation came into force in 1991, CF patients were allowed to mix no matter the strain or bugs they had. Little was known about cross-infection.

Looking at how segregation works now, people new to CF and use to the segregation rules will not believe that there was a time when CF patients went on coach trips together. One trip seeing the patients camping at Sherwood Forest, with 6 patients of different bugs and strains sharing a tent.

Lessons learnt about CF for new parents of children with CF
From my own experience, one thing I’ve said to parents new to CF is to encourage exercise with their CF child from an early age. Find something the child will enjoy and would take up as a hobby.

I am lucky to have a mild form of CF and have coped with it really well.

However, not all has been rosy with CF. There are times when I get upset, stressed or anxious about things. In particular when I’m not well.

However once treatment for a chest infection shows signs of working, the psychological strain this has on me is lifted.

CF will have a psychological effect on not just patients, but also their parents, siblings and partners. This side of CF happens to everyone at some level.

CF people do try to remain positive and tend to use a lot of humour as a coping mechanism, which for me works.

Every day will be a learning curve for anyone, whether it be for a CF person, relative or even the CF team at the specialist clinic.

One thing for sure, despite the effects CF can have, the treatment of today means we get to live a better quality of life and live longer and longer.

Two years ago a man well known at my hospital passed away at the age of 75, which for me is the oldest known patient.

If he can live so long especially when at the time he was born little was known about CF, then there is hope for us all.

Cystic Fibrosis sufferer finds big health improvement weeks into trial of a new, drug Orkambi

Source: Warrington Guardian
Date: Monday, 27 February 2017
Written by: Adam Everett

Peter Trengove has found a noticeable improvement in his health weeks into the trial of a new drug called Orkambi.

A Cystic Fibrosis sufferer says he has seen a noticeable improvement in his health weeks into a trial of a new breakthrough drug.

Woolston resident Peter Trengove nearly died at three days old because of Cystic Fibrosis, which makes it difficult for sufferers to breathe and digest food.

His older brother Paul died at the age of six due to the life-limiting condition.

But 37-year-old Peter has seen noticeable effects after three weeks of a four-month trial into a new drug called Orkambi.

Peter had earlier trialled a drug called QBW251, which was hoped to be close to a cure for the disease but proved to be not effective as predicted.

However, Orkambi, which sees two tablets taken twice a day at mealtimes, has given him fresh hope.

He said: “Although the outcome of the QBW251 drug trial concluded with the drug not being as effective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by people who meet criteria due to high costs for the drug.

Orkambi is on the market in America but is yet to come on the market in the UK due to high costs whereby for one person costs mount up to £100,000 per year.

However, all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either works in the same way as Orkambi or will work alongside it to make Orkambi more effective.

I am currently doing a drug trial whereby I have to take Orkambi, which is being tested alongside a trial drug that’s inhaled to see the effects these combined drugs have on Cystic Fibrosis.”

Peter has noticed fewer breathing difficulties, a ‘dramatic’ reduction in coughing and greater lung function.

He added: “I’ve been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a night’s sleep has reduced dramatically to being almost non-existent.

When I’m at the gym I am able to work that little bit harder on the exercise bike.

When I wasn’t well last year my lung function dropped right down to 31%, which is a dangerous level in Cystic Fibrosis and can result in being placed on the transplant list.

Since then my lung function has lingered around 40%, which although is better, it isn’t where I’d like it to be.

As a result of being on Orkambi for three weeks and one day, my lung function has increased to 49% – and this is just Orkambi.

I am yet to be placed back on Hypertonic Saline and this new trial drug which will compliment Orkambi.

My reckoning is once I’m on them my lung function will increase even more.”

Cystic Fibrosis, Orkambi & Warrington Borough Transport

Originally published on Monday, 20 February 2017

On my way home from Pure gym, I was delighted to see Warrington Borough Transport (WBT) display a poster raising awareness about Cystic Fibrosis (CF) on the bus stop on Manchester Road opposite the Esso garage.

Had I not been driving, or the roads were busy at the time of travelling, I would have pulled over to take a photo of this as it really made my day to see such publicity in aid of a life illness that I and many others suffer from.

I thought it would be nice to give WBT an insight into what I’ve been through with the new exciting breakthroughs in regards to better treatments for CF, and also update the Warrington Guardian with how things have been since I did the QBW251 trial in October 2015, a drug that was to be the closest to a cure for CF.

Although the outcome of the QBW251 drug trial concluded with the drug not being as effective as predicted in lab tests, there have been other similar medicines that have made it onto the market and used by CF people who meet criteria due to high costs for the drug.

One drug, which was on the news in recent months, is called Orkambi. This is a pink tablet whereby 2 are taken twice a day with food.

Orkambi is on the market in America but is yet to come on the market in the UK due to high costs whereby for 1 CF person, costs mount up to £100k per year.

However, all is not lost.

There have been continual drug trials happening over the last couple of years to find a drug that either work in the same way as Orkambi or will work alongside to make Orkambi more effective.

I am currently doing a drug trial whereby I have to take Orkambi, which is being tested alongside a trial drug that’s inhaled to see the effects these combined drugs have on CF.

At present, I am on week 4 of the trial whereby I am taking Orkambi before I start the trial drug next Tuesday (28 February 2017).

The drug trial program is as followed:

  • Month 1 – take Orkambi only
  • Month 2 – take Orkambi and trial drug
  • Month 3 – take Orkambi only
  • Month 4 – take Orkambi, trial drug and Hypertonic Saline (a nebulised salt solution that helps clear the lungs)

At the end of the trial, as a reward for my volunteered help, I will be allowed to continue Orkambi.

The question you’ve probably been asking throughout this email is, “Have I noticed any effects of Orkambi?”

The simple answer is, yes.

“What effects have I experienced?”

I’ve been able to breath better and when I cough, the feeling I have in my lungs is as though nothing is there.

My coughing that occurs in the morning after a nights sleep has reduced dramatically to almost non-existent.

When I’m at the gym I am able to work that little bit harder on the exercise bike and my heart rate at its peak has dropped from 150 beats per minute to 120.

I am yet to know how Orkambi has affected my lung function. At the beginning of the trial, my lung function was 44%, so it will be interesting to see how this changes over the coming months.

Had it not been for the likes of Warrington Borough Transport and many others who raise awareness of CF, the donations raised for the CF Trust would be almost non-existent and vital drug trials, an example described above, will not happen.

It may have been one poster on the side of a bus stop that I have seen on my travels through Warrington, but if I have spotted the poster, there’s a chance other commuters and bus users will have seen this too.

I am pretty sure if every single person donated £1 after seeing the poster, this would help fund further investigations into vital treatments leading to a possible cure for CF.

So thanks again Warrington Borough Transport for your contribution in raising awareness of CF, a life-threatening illness.

New Online Prescription Service

Originally published on Monday, 13 February 2017

Lloyds Pharmacy informed me Holes Lane Surgery have been chosen for a pilot online patient service, which has already been rolled out across the Halton and Liverpool areas.

The service is called “SystmOnline“.

It is very easy to register. All you need to do is take 2 forms of ID (1 picture ID and a utility bill with your home address on).

I was able to use my driving licence as a picture and address ID, which saved time having to dig out a utility bill.

I was given a letter with a website address for the surgery on, my username and also a temporary password, which I changed once I logged into the service for the first time.

This online service allows you to do the following:

  • Book appointments
  • Check future appointments
  • Check previous appointments

Pros: you’re not having to phone the GP surgery on a 0845 number and wait for an answer, saving your phone bill.

  • Order repeat prescription
  • Check if you have any uncollected prescription
  • Register or change which pharmacy you would like to collect prescriptions from.

Pros: this saves you having to travel to your local pharmacy or GP surgery to delivery a repeat prescription form.

Although you can visit the pharmacy/surgery in person to place an order, this saves you time on travel.

Cons: Not all people will have computer access or know how to use one. If they’re able to travel to the GP surgery to place a prescription order this won’t be an issue. If not, they will be able to have a patient representative to do this for them.

For more information about this online service, click on this link.

JANUARY 2017: 40 years of Cystic Fibrosis Awareness

Originally published on Tuesday, 17 January 2017

On 15 October 1977 my older brother, Paul, then aged 6 years old, sadly passed away after being overpowered by the deadly genetic disorder, Cystic Fibrosis (CF).

On 24 August 1979, I was born with a much milder strain of CF compared to what Paul had.

Today would’ve been his 46th birthday and this October will be 40 years since my parents lost their first son and on 24 August 2019 time will be my 40th birthday.

As a way to say thanks to the care us CFers receive, I, with your help, would like to raise funds for the Manchester Adult CF Centre at Wythenshawe Hospital as had it not been for their efforts and help with the care of myself and others with CF, I don’t know where we’d be right now.

The money raised will go towards equipment needed to help improve the quality of life of patients who endure CF and stay as inpatients for what can be days, weeks or sometimes months whilst being treated for their illness. Some of whom like my brother sadly spend their last moments there.

So please, dip your hands in your pockets, purses, wallets and back of sofas, and donate what you can no matter how big or small, and make my 40th something special to remember.

To donate your gift, please visit Manchester Adult Cystic Fibrosis Centre and mark your donation with “Peter Trengove”.

CF & Fitness: Part 6

Originally published on Sunday, 1 January 2017

Last October I took part in the study, “Gastro-oesophageal reflux in patients with cystic fibrosis and its effect on lung function”.

The outcome of this is I was diagnosed with GORD (Heartburn and gastro-oesophageal reflux disease).

From doing further reading into what GORD is, I found treatment is fairly easy as it mainly involves small life changes.

The following is extracted from the GORD information link.

“You may find the following measures can help reduce heartburn and other symptoms of GORD:

  • Eat smaller and more frequent meals, rather than three large meals a day – don’t eat or drink alcohol within three or four hours before going to bed, and avoid having your largest meal of the day in the evening.
  • Avoid anything you think triggers your symptoms – common triggers include coffee, chocolate, tomatoes, alcohol, and fatty or spicy food.
  • Don’t wear tight clothing – clothes that are tight around your tummy may make your symptoms worse.
  • Raise the head of your bed by up to 20cm (8 inches) – placing a piece of wood or blocks underneath one end of your bed may reduce symptoms at night; don’t just use extra pillows, as this can put a strain on your tummy.
  • Try to relax – stress can make heartburn and GORD worse, so learning relaxation techniques may help if you’re often feeling stressed.
  • Maintain a healthy weight – if you’re overweight, losing weight may help reduce your symptoms.
  • Stop smoking – smoke can irritate your digestive system and may make your symptoms worse.

If you’re taking medication for other health conditions, check with your GP to find out whether they could be contributing to your symptoms.

Different medicines may be available, but don’t stop taking any prescribed medication without consulting your GP first.”

From looking at this, the action I need to take is eating smaller and more frequent meals. So this is my new year’s resolution to avoid the complications of GORD.