Add Cystic Fibrosis to the exempt from prescription charges list

Please click here to sign the petition

People with certain medical conditions are exempt from paying prescription charges. However, the list of exempt conditions does not include cystic fibrosis. This is because the exempt list was drawn up over 40 years ago, in 1968, when most children with cystic fibrosis did not live until adulthood.

Fortunately, the outlook for people with cystic fibrosis has improved markedly since then and most people with cystic fibrosis live until adulthood, although still with a reduced life expectancy compared with the population as a whole.

However, the list of exempt conditions has not been properly revised since 1968 and therefore does not take account of this.

Many people with cystic fibrosis have to pay for all of their prescriptions unless they develop diabetes, a complication of cystic fibrosis that affects over 30% of people with cystic fibrosis and which is included on the exempt list.

The increasing ageing cystic fibrosis population over the years is as a result of improved treatments. This strongly demonstrates the exempt list is over 40 years out of date and cystic fibrosis should now be included.

Cystic Fibrosis drug given green light in England

24 October 2019

A life-extending drug for cystic fibrosis will be available on the NHS in England, health bosses say.

NHS England reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks.  Patients should be able to get the drug within 30 days.

The drug improves lung function and reduces breathing difficulties and can be given to children as young as two.

The firm wanted to charge £100,000 per patient per year but a compromise has been reached in a confidential deal.

It is understood to involve significantly less than the sum originally asked for.

Two other drugs made by Vertex – Symkevi and Kalydeco – will be made available as part of the deal.

These also treat cystic fibrosis symptoms.  Symkevi is restricted to over 12-year-olds, while Kalydeco can be used from 12 months.

The treatments do not work for all patients with cystic fibrosis – only those with certain mutations.

It is estimated about half of the 10,000 patients in the UK will benefit from these drugs.

Cystic fibrosis is a life-shortening genetic condition that can cause fatal lung damage.

Only about half of those with the condition live to the age of 32.

‘Best present ever’

Patients and campaigners have expressed delight at the announcement.

Christina Walker said it meant her son, Luis, eight, should be on it by Christmas, calling it the “best present ever”.

“I can’t stop smiling. I’m overwhelmingly happy. It’s absolutely wonderful,” she said.

David Louden, from Carlisle, said the decision would make a “huge difference” to his daughter, Ayda, who has cystic fibrosis.

He said the battle to get it had been “demoralising”.

“You could see this drug with all its benefits that was just hanging there in the balance, dangling like a carrot in front of you but you couldn’t access it.”

‘Good for patients and taxpayers’

More than 10,000 people in the UK have cystic fibrosis, which cause fatal lung damage

The deal comes after the Scottish government reached an agreement with the manufacturers last month.

Under the terms of the agreement both Wales and Northern Ireland can now access the drug for the same price as NHS England, but there has been no announcement over whether they will.

NHS England chief executive Simon Stevens said the deal was “good for patients and fair to British taxpayers”.

Health Secretary Matt Hancock described it as “wonderful news”.

David Ramsden, of the Cystic Fibrosis Trust, said: “This is a very special day and I want to thank people with cystic fibrosis, their families and everyone who has been part of this campaign for their persistence and determination to keep on fighting.”

He also said there could be more good news in the pipeline as a new therapy Trikafta, which 90% of people with the condition could benefit from, was getting close to be licensed for use.

‘Life-changing’ cystic fibrosis drug deal for Scotland is welcomed

12 September 2019

SNP MP Marion Fellows with granddaughter Saoirse, who was diagnosed when she was three weeks old

Families have welcomed a deal which will make two “life-changing” cystic fibrosis drugs available to eligible patients in Scotland.

A five-year agreement has been reached between the Scottish government and pharmaceutical company Vertex over the use of Orkambi and Symkevi.

The drugs improve lung health but were rejected for NHS use last month because they were not deemed cost-effective.

The medication normally costs £100,000 per patient, per year.

The Scottish government said it had secured a “confidential discount” from the manufacturer.

Patients in other parts of the UK are still not able to access the treatment, with campaigners calling for an end to the “postcode lottery”.

‘Never let up’

SNP MP for Motherwell and Wishaw Marion Fellows, whose three-year-old granddaughter Saoirse has cystic fibrosis, said it was a “big moment” for patients and their families, who had been “relentless and inspiring” in their campaign.

Ms Fellows said: “I’m so glad that so many families across Scotland will benefit from these new drugs. Hundreds will be able to lead longer and fuller lives thanks to this decision.

“The Scottish government never let up in discussions and is leading the way in cystic fibrosis treatment.

“But cystic fibrosis knows no borders. The UK government must follow the Scottish government’s lead and make it available to sufferers in England also.”

The drugs can reduce hospital admissions by stabilising lung health

Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage, and affects about 10,400 people in the UK – around 900 of them in Scotland.

Only around half of those with the condition live to the age of 40.

NHS Scotland estimates that one in 24 Scots have a CFTR mutation which, if carried by both parents, would lead to a child being born with cystic fibrosis.

Glasgow mum Gail Gilmour, whose son has cystic fibrosis, tweeted that there were “no words adequate” to thank those who helped secure the deal for Scottish patients.

Others have said that they hoped it would lead to progress in negotiations for England, Wales and Northern Ireland.

Earlier this year campaigners appealed to the UK government to use its powers to break a deadlock in making Orkambi available on the NHS in England.

Vertex refused a £500m offer for the drug over five years – which was described as the “largest commitment” NHS England had ever made.

Those affected want other drug firms to be asked to make a cheaper version.

The UK government’s Department of Health said its approach was still to urge Vertex to accept NHS England’s “generous offer”.

‘Landmark moment’

The Scottish Medicines Consortium (SMC) had rejected the routine use of the drug in August, saying there were uncertainties about the long-term health benefits of Orkambi and Symkevi in relation to their costs.

David Ramsden, chief executive of the Cystic Fibrosis Trust, said the deal was a “landmark moment” for the hundreds of people with CF and their families across Scotland.

“This breakthrough is a victory for their perseverance and enduring hope. It means 350 eligible people living in Scotland will have access to drugs that stabilise their lung health and reduce the need for hospital admissions.”

He said the trust would continue to campaign for access to the drugs in England, Wales and Northern Ireland, adding: “Scotland’s success must now be replicated across the UK without further damaging delay.”


What are Orkambi and Symkevi?

Since 2015, the drug Orkambi has been licensed to treat cystic fibrosis in patients from two-year-olds to adults, who have a specific genetic mutation known as F508del.

It was not available on the NHS, except for certain people on compassionate grounds.

Symkevi is used to treat the same mutation in patients age 12 and older.

The mutation causes the production of an abnormal protein that disrupts how water and chloride are transported in the body.

Orkambi has been shown in clinical trials to improve lung function and respiratory symptoms in people with cystic fibrosis.

It is the first of a string of drugs that have been developed, with newer ones expected to be even more effective.

Scotland’s Health Secretary Jeane Freeman said the “fantastic news” would allow cystic fibrosis patients to “live fuller lives for longer”.

“The agreement has been reached after extensive discussions between the Scottish government and Vertex Pharmaceuticals and means the medicines will now be made available to patients on the NHS in Scotland, subject to a confidential discount,” she added.

Vertex has also committed to collecting real-time data on the medicines to support any future submissions to the SMC.

Ludovic Fenaux, Vertex senior vice president, said: “We would like to thank the Scottish authorities for their partnership and the collaborative and flexible way that we have worked together to find this access solution.

“It means that approximately 400 eligible cystic fibrosis patients in Scotland now have access to Orkambi and Symkevi.”

Some Scottish patients have previously had access to Orkambi and Symkevi through the Peer Approved Clinical System Tier 2 (PACS Tier 2), which allows doctors to apply for access on behalf of individual patients.

A spokesperson for SMC said the pharmaceutical industry had responsibility for bringing their medicines to market at a fair price.

“The SMC members make these difficult decisions based on extensive clinical experience and taking all of the available evidence into account, including that provided by patient groups. We look forward to receiving new evidence from Vertex on the impact of these medicines following the agreement they have reached with the Scottish government.”

A time for the Cystic Fibrosis community to celebrate…

Today I’ve had news that NHS England has reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks.
 
This was brought to my attention through the Cystic Fibrosis (CF) clinic I attend after it was announced on BBC News (see link).
 
https://www.bbc.co.uk/news/health-50144742
 
CF is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.
 
The effects of CF reduce the quality of life of patients as they age and whilst over the years the quality of life and average life expectancy has improved due to advancing treatments, the research into new treatments will always be ongoing that will eventually see CF being cured.
 
Orkambi is currently the closest to a cure for CF. Though until now has been offered to patients on compassionate grounds. Either as a result of a drop in lung function or as a result of volunteering to take part in an Orkambi related drug study.
 
I’ve been taking Orkambi since January 2017 on compassionate grounds after taking part in a drug study.
 
Within a week commencing the drug, I found I was able to breathe easier and the first month saw a vast improvement with my endurance. Now my endurance is back to how it was 5 years ago.
 
You can say today’s news has been a huge welcome and something worth celebrating about.

Endurance Test

Wednesday, 16 October 2019

Today at the CF clinic I did an endurance test, something I do as part of my annual assessment to see if changes to my treatment are required. Usually, there are minor tweaks. Mainly new and better treatment that can replace one or more treatments I’m already on.

Anyway, I’m digressing here. Part of my lung function is to do an endurance test to see how my lungs work during cardio. This is done on an exercise bike whereby I’m attached to a computer that monitors my breathing, oxygen intake, carbon dioxide outtake, pulse rate, etc.

Last year my endurance improved compared to the previous year despite the fact I was unknowingly unwell at the time. This year with how well I’ve been due to a few changes in treatment, keeping on top of regular exercise, progressing with workouts and maintaining a healthy diet, my endurance test, as expected, showed a vast improvement in my lung function.

Improvements include:

  • controlled breathing during cardio exercise
  • opening my airways and lungs more and taking in more oxygen and expelling more carbon dioxide
  • lung function increased from 31% as recorded last year to 52 %
  • performance on the exercise bike where I was able to push myself further

Overall I was really made up with the outcome of this, which has boosted my confidence even more for pushing myself whilst at the gym.

I didn’t need the endurance test to show vast improvements in lung function. At the gym with the Personal Trainer, I manage to do approx 1 full workout and half of a second workout in an hour. The results get me breathing harder and quick recovery timing. The Personal Trainer often comments how I’m able to do that bit more, but need to be more confident, which is one thing I’m working on.

Now I’ve done the endurance test and seen how much lung function improvements have been made over the last year, this alone has given my confidence a boost.

World Mental Health Day

Thursday, 10 October 2019

Today is World Mental Health Day. Some will know what it means to raise the importance of talking about what is on your mind, which is one way of dealing with mental health. Another is doing things that make you happy such as being in a job you love, being around people who appreciate who you are, going the gym to train and fight through the effects through cardio and strength, hobbies, etc.

I have the odd bout of fearing not my future, but my demise. Why? Some will already know one reason why. Unlike some, I am not in denial of my mental health. I’m rather open about it and deal with it by talking or doing something that helps. My mental health issue is something that comes and goes. What helps is keeping busy with things like work, weekends at the cottage and the gym. Sometimes I can be motivated. Sometimes not and just don’t want to do anything.

With the gym, a lot of motivation comes from my PT, who helps by encouraging me through a good cardio and strength workout. The last few sessions have been amazing compared to a year ago. My breathing control and technique have improved vastly. My lung function reaching nearly the same score I was at 5 years ago.

I’ll be blunt, but had it not been for the much needed improved treatment for CF, I question whether I’d still be here, or whether my health would be as good as it was 10 years ago, which is why I take my meds and have the fitness lifestyle I have.

The meds and healthy lifestyle have maintained my health well, so the thing that baffles me is despite how well I am and how well I’m doing, I still have the odd mental fall.

It sort of pisses me off more than anything because I shouldn’t be feeling like this with how well I’m doing. Though I’m positive that I’m not the only one who is like this.

One thing for sure is I talk about how I feel rather than shut myself off and not talk at all about it. I’d much rather have people around me than push people out my life as some have done.

There is great importance to have people around you as had they not been there, I don’t think I would be here.

Though sadly not everyone is in the same way of thinking.

Transfer from DLA to PIP 8

Originally published on Tuesday, 19 December 2017

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

It’s been a whilst since I last wrote a blog in regards to my PIP appeal.

The tribunal came and I was very nervous. So much so that at first I didn’t know whether or not I was going to be able to speak. However with the tremendous support from my Social Worker, I managed to answer all of the questions without much issue.

Both my Social Worker and I felt the tribunal went well. And whilst there’s good news, there’s also not so good news.

The good news is my score total for PIP went from zero points for daily living and mobility, to 6 points for daily living and 4 points for mobility.

Ok my daily living score was 2 points short for me to have the daily living part of PIP, but the main thing is I won points.

I am now in the process of reapplying for PIP, so fingers crossed that something comes from this.

Transfer from DLA to PIP 7

Originally published on Friday, 12 May 2017

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

Today I’ve had a response from DWP in regards to my Mandatory Reconsideration.

The outcome is they are ignoring existing or fresh evidence of my day to day living as a result of Cystic Fibrosis and refusing to give any form of points towards my claim.

The letter is attached for all to read and laugh at as I now prepare my appeal.

I have sent an email of complaint to ATOS, who are looking into this claim also. A copy of the email is displayed in this blog.

Email to ATOS:
To whom it may concern

I suffer from Cystic Fibrosis (CF), a genetic condition I suffer from since birth. There is no cure and as I get older, my symptoms get worse resulting in fighting infection getting more difficult and recovery taking longer.

With the treatment, frequent hospital visits, and impact CF has on my breathing, social anxiety and malnutrition issues, CF has a detrimental impact on my day to day living.

As a result of being given notice of my DLA coming to an end, I made a claim for transfer from DLA to PIP.

As requested by the application, I gave solid evidence of my condition with help from my Social Worker at the Manchester Adult Cystic Fibrosis Centre at Wythenshawe Hospital. With her help and support, and various clinic letters, hospital discharge notes, repeat prescription, etc, I had everything required to prove I have CF that would support my PIP claim.

I had a face to face interview and this appeared to go as I expected.

However, it came to the conclusion my claim was to be rejected with feedback that I was too healthy and didn’t show any sign of having CF or anxiety issues – even though the interviewer stated at the beginning of the interview I showed signs of anxiety. This was evident by how I spoke and constantly sidetracked away from the questions and brought back into focus with the help from my companion.

When I read the report I noticed a few errors were made and information I shared at the interview was not included in the report.

I put forward a Mandatory Reconsideration (MR) with further evidence of my CF, which is attached to this email.

I have had a response to my MR, and it seems that despite the existing and new evidence given, I am told no reward will be given. The decision-maker has ignored the new evidence and has chosen to agree with the original decision.

It is quite clear from reading the MR notice dated 3 May 2017 that any evidence is given, whether this is the original or new evidence provided, the evidence is being ignored and the decision is being made based on a 1-hour interview, not a lifetime of illness and suffering.

I feel as though I’m being called a liar in regards to my health even though I have solid evidence as attached that CF does affect my day to day living.

I have already gone to the press, who have made a good article about my treatment from DWP.

I have written to my MP, the Labour Leader, and made blogs about my treatment and also posts on Facebook.

The treatment I’ve endured by ATOS and DWP are despicable.

I sincerely hope that a family member of these people cruelly taunting my condition by indirectly calling me a liar about my health doesn’t have to endure the same path as I have gone down.

The effect this has had on me has left me not wanting to go out. I’ve lost appetite and no motivation to do anything.

How these people sleep at night is beyond me.

Please look at the information I’ve provided here and also my application history in regards to PIP claim.

I’d love to see what miracle cure I’ve had for these people to tell me there’s nothing wrong with my health.

Regards

Transfer from DLA to PIP 6

Originally published on Wednesday, 19 April 2017

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

Today I sat with my Social Worker to look through the Mandatory Reconsideration letters we are sending to DWP.

Letter 1, which I will post below, is something I have written.

Letters 2 and 3 are supporting letters from my Social Worker and Specialist Doctor.

On A4 paper my letter spans over 16 pages.

I have had comments from people on facebook who suggest this is too long and won’t be read properly.

However, I have been advised the detail I’ve placed in my letter is perfect as this is a legal document, not a postcard.

Here is what I wrote:

13 April 2017

Dear Diane Chennell

In response to the decision letter, I would like the decision on my PIP claim to be changed as I do not agree with your decision dated 20 March 2017 and would like to request a Mandatory Reconsideration.

The reasons why I disagree with the decision are:

  • I do not feel that my problems in the areas of Daily Living/Mobility were considered fully. For example, I can sometimes carry out the activities, but I cannot do these ‘reliably’, most of the time.
  • I do not feel that the support I need from another person to carry out my treatments to ‘an acceptable standard’ has been recognised by the decision-maker.
  • I do not feel that the Assessor listened to how my condition affects me and made assumptions on my ability to use my upper and lower limbs based on the 1-hour consultation, not a lifetime.
  • The Assessor has based their report on how I looked on the day and did not consider that I spent most days in the last 3 months sitting at home, unable to go out.

As stated in an email from the DWP press office, it was stated,

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

Given the evidence I hold in form of the decision letter and the consultation report form (PA4), it is quite clear the decision wasn’t based on information provided by myself or the supporting evidence from my medical specialist. Otherwise, I wouldn’t be in a position I am in now in writing this letter.

I feel the claim and evidence I gave in the form of letters from my consultations weren’t looked at as detailed below:

Section 3, Q3: Preparing Food

In my application and also at the assessment I stated that I require help from my partner to prepare or cook a simple meal. I explained the importance of having regular meals to maintain my weight, which I can easily lose when I lose my appetite due to low mood, unwell and breathless. I also stated that I avoid going into the kitchen as the moisture can trigger a coughing fit.

As a result of difficulties maintaining weight, I get weighed at every Cystic Fibrosis Clinic.

Evidence of my claim in me requiring help from my partner to prepare or cook a simple meal due to my breathing difficulties was shown in:

  • Consultation letter dated 05/10/2016 where my weight and lung exacerbation was recorded, and also my stress and low mood,
  • Consultation letter dated 30/11/2016 where my lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot, and also my stress and low mood,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11), and also my stress and low mood,
  • Consultation letter dated 21/12/2016 whereby I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms, and also my stress and low mood.

At the interview, it was recorded that I:

“used to cook a lot, but now partner does the majority of it.”

However, it also states that if I:

“feel up to it might do a special meal at the weekend.”

I did state that this is a rare occurrence due to breathing issues whilst in the hot kitchen, but this wasn’t recorded.

I stated that if I was to make a meal for myself, I would make most likely have Fortisip, which isn’t a replacement for food, but a food supplement. Drinking a Fortisip isn’t classed as making a basic meal.

In the justification for descriptor choice, it states it:

“indicates in the PIP questionnaire a difficulty due to low mood reduced appetite and takes food supplements.

Although condition history shows I have Cystic Fibrosis and can have times in hospital due to level of illness, yet this is not for the majority of time.”

I would like to confirm that I attend the clinic every 4 weeks for my health to be monitored, which includes lung function and weight and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection, which highly affects my appetite and therefore concludes I require help in preparing food.

I would also like to know how you’ve managed to conclude that my gym attendance means I am able to prepare a basic meal? My Personal Trainer is there to monitor the management of my fitness safely in accordance with my lung function and strength, not teach me how to prepare a meal!

Also, the environment of a gym is appropriate for my breathing when compared to a steamed up hot environment the kitchen holds whilst cooking.

You cannot use these two activities as a reason to deny points for this part of the claim due to them being totally different activities and environments.

In the letter from my Social Worker, Agnes Tansinda, it states that my:

“lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

I would like to know-how, based on all the evidence provided in regard to requiring assistance in preparing a basic meal I scored 0 points?

From looking at the score chart, I feel I should have scored at least 4 points.

Section 3, Q4: Eating and Drinking

In my application and also at the assessment I stated that when in a low mood or unwell, I lose my appetite or need prompting from my partner to eat and drink. I explained had I not had help from my partner, I would simply miss meals and not take in as many fluids as I should.

I stated in my application that:

“although I do not have a feeding tube, I regularly have Fortisip as a food supplement to replace any food nutrition lost through malnutrition and also maintains my weight.”

I also stated that:

“diet is very important as part of my treatment for Cystic Fibrosis as I need to eat regular meals and have to take 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 lose motivation to eat.”

I am constantly reminded by my partner to eat.

Evidence of my claim in me requiring having difficulties in eating due to my breathing difficulties were shown in:

  • Consultation letter dated 05/10/2016 where my weight and lung exacerbation was recorded, and also my stress and low mood,
  • Consultation letter dated 30/11/2016 where my lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot, and also my stress and low mood,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11), and also my stress and low mood,
  • Consultation letter dated 21/12/2016 whereby I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms, and also my stress and low mood.

At the interview, it was recorded that:

“during the day I take medication related to eating, takes nutritional supplements, eats on top of this and my favourite snack is fish finger sandwiches.”

I did state at the interview my motivational issues with eating and drinking, that I need prompting on a regular basis by my partner, and this tied in with the issues I face for preparing a basic meal. However, it seems this wasn’t recorded properly by the assessor.

In the justification for descriptor choice, it states it:

“indicates in the PIP questionnaire a difficulty due to low mood reduced appetite and takes food supplements.

Although condition history shows I have Cystic Fibrosis and can have times in hospital due to level of illness, yet this is not for the majority of time.

Functional history shows during the day I take medications related to eating, takes nutritional supplements and eats on top of this.

MSE shows I looked well and of average build.”

You cannot conclude that I don’t have issues with eating and drinking based on appearances. The medical evidence given by means of prescription shows that I rely heavily on food and vitamin supplements my body cannot otherwise absorb naturally. If my medication was taken away from me, my weight would decrease quickly as will my quality of life.

To say I “look well” doesn’t mean I “am well”. If I “am well” because I “look well” then why is it the evidence provided says otherwise?

As stated before and I’ll state again:

“I attend clinic every 4 weeks for my health to be monitored, which includes lung function and weight, and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection, which highly affects my appetite and therefore concludes I require help in preparing food.”

In the letter from my Social Worker, Agnes Tansinda, it states that my:

“lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

I would like to know-how, based on all the evidence provided in regard to eating and drinking I scored 0 points?

From looking at the score chart, I feel I should have scored at least 4 points.

Section 3, Q5: Managing Treatments

On a daily basis, I have to take up to 72 tablets per day even when I am well as a maintenance regime. This increases when I have a lung exacerbation. This is quite a lot hence the support I need.

In my application and also at the assessment I stated that:

“I use a dosette box and a mobile app dose reminder alert for taking medication.

My partner helps by making sure I have the required medication when we go out from the house.

Missing a dose of Creon [taken with fatty food] causes stomach ache and diarrhoea.

Missing a dose of Ranitidine [to control GORD] causes heartburn and GORD issues.

Missing inhalers or nebulisers causes breathing issues or more prone to infection.

It can take anything between 5 to 30 minutes to do treatments.

(Although I realise now I meant 15 to 30 minutes to do treatment, which include airway clearance, inhalers, nebulisers and tablets every morning and I have to repeat the same procedure every evening. This is when I am well. It does take me longer when I am unwell and full of sputum.)

Sometimes if experiencing chest issues, an increased cough can cause sore throat and chest pains.

Exercise is also part of my treatment regimes. I have to exercise at least 3 times a week. I have a Personal Trainer for support with my exercise as recommended by my physiotherapist.

I also have to do my nebulisers and airway clearance twice a day for up to an hour.

On average it takes me up to 5 hours a day to do treatment not including exercise.

My high treatment burden affects my mood and my partner often prompts me to do treatment.”

I also stated that I:

“need to use an aid or appliance to monitor my health conditions, take medication or manage home treatments,”

and also:

“need help from another person to monitor my health conditions, take medication or manage home treatments.”

I am constantly reminded by my partner to take my treatment.

Evidence of my claim in me requiring having treatment for Cystic Fibrosis was shown in:

  • Consultation letter dated 05/10/2016 where my weight, lung function and lung exacerbation was recorded, and a list of my repeat prescription was provided,
  • Consultation letter dated 12/10/2016 where my lung function and lung exacerbation was recorded, and a list of my repeat prescription was provided,
  • Consultation letter dated 30/11/2016 where my lung function and lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot, and a list of my repeat prescription was provided,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11), and a list of my repeat prescription was provided,
  • Discharge summary dated 07/12/2016,
  • Discharge summary dated 19/12/2016,
  • Consultation letter dated 21/12/2016 where my lung function was recorded, showed I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms and a list of my repeat prescription was provided,

At the interview, it was recorded that:

“Medication is as per PIP questionnaire – medication list was confirmed at assessment. [I] confirmed what [I] take, when [I] take it and what it is for.

Medication prescribed consistent with Cystic Fibrosis, digestive enzymes, long term antibiotics, nutritional supplements, trio of inhaled medications, oral medication for respiratory problems, multiple individual vitamins and minerals, ant acid.

Therapy – has a flutter that [I] manage daily.

Side effects – gastric problems.”

What the interviewer failed to record was the issues I have in remembering to take my medication and that I have been known to miss doses resulting in the effects as stated in my PIP questionnaire.

I did state at the interview my use of medical aids for what I should be taking and at what time. However should I independently leave the house, I tend to forget to take with my medication I require whilst out of the house. This is why I stated I rely on my partner as a reminder for checking I have everything I require. However, it seems this wasn’t recorded properly by the assessor.

In the justification for descriptor choice, it states:

“although [I] indicate a difficulty with managing medication in his questionnaire [I] was able to tell the assessor what [I] take, what it is for and when to take them. Condition history indicates no cognitive impairment and no input for a mental health condition.”

You cannot conclude that just because I don’t have mental health issues that I don’t have issues with managing my treatment.

I rely heavily on medical aids and reminders from either tool installed on my mobile or help from my partner who makes sure I have the required medication at the right times.

I also stated in my application that it takes an average of 5 hours per day (average 35 hours per week) to complete my treatments.

The medical evidence given by means of prescription shows that I rely heavily on treatment as my body cannot otherwise function naturally. If my medication was taken away from me, my weight would decrease quickly as will my quality of life.

As stated before and I’ll state again:

“I attend clinic every 4 weeks for my health to be monitored, which includes lung function and weight, and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection, which highly affects my appetite and therefore concludes I require help in preparing food.”

In the letter from my Social Worker, it states that my:

“CF is a multisystem condition affecting primarily the lungs, digestive system and the pancreas with many of the patient developing further complications with age.

The condition is manageable with treatment and specialist medical support.

Lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

This is evidence that without the support I get from a multidisciplinary team and reminders to take my medication whether from use of medical aid or from my partner, I will struggle to take the medication prescribed.

I would like to know-how, based on all the evidence provided in regard to managing treatment I scored 0 points?

From looking at the score chart, I feel I should have scored at least 8 points.

Section 3, Q6: Washing and Bathing

I need to wash daily because of the increased sweating due to my condition and the salt on my skin. I am restricted to carry out this function daily because of fatigue and breathlessness, so even on a good day, it takes up to 30 minutes and almost doubles when unwell.

In my application and also at the assessment I stated that:

“I sometimes need help from another person to wash and bathe.”

I also stated that:

“I find personal hygiene, daily washing and oral hygiene a great importance for preventing infection. Especially if I’ve physically been exposed to someone who is unwell, I’m on certain medication or administering IV treatment.

I have a port-a-cath on my side, which is used for intravenous antibiotic access. When I’m on IVs, I struggle with my personal care as I get quite fatigued by the medication.

I also have to keep the port dry.

When I am very unwell and quite breathless, I get help from another person to wash or it can take twice as long to bathe.”

Evidence of my claim in me requiring having fatigue issues that can impact on washing and bathing were shown in:

  • Consultation letter dated 05/10/2016 where my lung function and lung exacerbation was recorded, and that I have a port-a-cath,
  • Consultation letter dated 12/10/2016 where my lung function and lung exacerbation was recorded, and that I have a port-a-cath,
  • Consultation letter dated 30/11/2016 where my lung function and lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot, and that I have a port-a-cath,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11), and that I have a port-a-cath,
  • Consultation letter dated 21/12/2016 where my lung function was recorded, showed I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms, and that I have a port-a-cath.

At the interview, it was recorded that I:

“shower daily and can wash everywhere generally, but when ill and tried to shower, [I experienced] pain down [my] right side, [which was reported] to staff [and] left [me] anxious for a few days.”

What the interviewer failed to record was as a result of the issues I had in bathing I wasn’t able to wash properly and as stated in my PIP questionnaire, would have required assistance.

In the justification for descriptor choice, it states that I:

“indicated in the PIP questionnaire a difficulty due to fatigue, breathlessness and is slow.”

I would also like to know how you’ve managed to conclude that my gym attendance means I am able to wash and bathe? My Personal Trainer is there to monitor the management of my fitness safely in accordance with my lung function and strength, not teach me how to wash!

If the link is that:

“if he can go the gym, he can wash,”

Then I can assure you that I’m highlighting I get fatigued and pain whilst ill, which affects my washing and bathing. If I am unable to wash and bathe due to discomfort or illness, I am therefore unable to attend the gym for the same reason!

You cannot use these two activities as a reason to deny points for this part of the claim due to the fact that if I can’t do one as a result of fatigue and pain, I, therefore, won’t be able to do the other.

You cannot use:

“MSE shows he looks well, did not look tired”

as another reason to deny me points. This judgement was based on 1 hour of my life, and also on a good day. I have since had bad days whereby I’ve simply not wanted to wash, go out, or get out of bed as a result of being tired because of my Cystic Fibrosis.

As stated before and I’ll state again:

“I attend clinic every 4 weeks for my health to be monitored, which includes lung function and weight, and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection.”

This highlights the importance of washing and bathing.

In the letter from my Social Worker, Agnes Tansinda, it states that my:

“CF is a multisystem condition affecting primarily the lungs, digestive system and the pancreas with many of the patient developing further complications with age.

The condition is manageable with treatment and specialist medical support.

Lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

This is evidence that without the support I get from a multidisciplinary team who remind me of the importance of personal hygiene or help from my partner when ill, I will struggle to wash and bathe.

I would like to know-how, based on all the evidence provided in regard to managing treatment I scored 0 points?

From looking at the score chart, I feel I should have scored at least 2 points.

Section 3, Q8: Dressing and Undressing

Cystic Fibrosis is a chronic condition and with my decreased lung function I get breathless on minimal exertion on a daily basis and so it takes me 30 minutes to get dressed/undressed on my good day. On a bad day, I don’t get dressed because of fatigue and breathlessness.

In my application and also at the assessment I stated that:

“I sometimes need help from another person to dress or undress.”

I also stated that:

“When I am unwell it takes me longer to get dressed due to having to rest as a result of breathlessness.

I particularly have issues with socks and shoes due to stain on chest when ill.”

Evidence of my claim in me requiring having fatigue issues that can impact on washing and bathing were shown in:

  • Consultation letter dated 05/10/2016 where my lung function and lung exacerbation was recorded,
  • Consultation letter dated 12/10/2016 where my lung function and lung exacerbation was recorded,
  • Consultation letter dated 30/11/2016 where my lung function and lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11),
  • Consultation letter dated 21/12/2016 where my lung function was recorded, showed I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms.

At the interview, it was recorded that:

“on a good day [I] am fine dressing and undressing, but when [I] was ill last year struggles so bad getting dressed, that [I] could not do it and had to call work to tell them [I] could not make it in.”

What the interviewer failed to record was I used my latest experience of being ill last year as a typical example of how I am.

The interviewer also failed to record that I can also feel so breathless and fatigued that I don’t get dressed at all and stay in my bedclothes all day.

In the justification for descriptor choice, it states that I:

“indicate in the PIP questionnaire it takes longer on a bad day [to get dressed as a result of] fatigue and breathlessness.”

I would also like to know how you’ve managed to conclude that my gym attendance means I am able to dress and undress?

If the link is that:

“if he can go the gym, he can get dressed,”

Then I can assure you that I’m highlighting I get fatigued and pain whilst ill, which affects my dressing and undressing. If I am unable to dress and undress due to discomfort or illness, I am therefore unable to attend the gym for the same reason!

You cannot use these two activities as a reason to deny points for this part of the claim due to the fact that if I can’t do one as a result of fatigue and pain, I, therefore, won’t be able to do the other.

You cannot use:

“MSE shows he looks well, did not look tired”

as another reason to deny me points. This judgement was based on 1 hour of my life, and also on 1 episode of being ill, not a lifetime. I have since had bad days whereby I’ve simply not wanted to dress, go out, or get out of bed as a result of being tired because of my Cystic Fibrosis.

As stated before and I’ll state again:

“I attend clinic every 4 weeks for my health to be monitored, which includes lung function and weight, and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection.”

This highlights the effects Cystic Fibrosis can have for dressing and undressing.

In the letter from my Social Worker, Agnes Tansinda, it states that my:

“CF is a multisystem condition affecting primarily the lungs, digestive system and the pancreas with many of the patient developing further complications with age.

The condition is manageable with treatment and specialist medical support.

Lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

This is evidence that without the support I get from my partner when ill, I will struggle to dress and undress.

I would like to know-how, based on all the evidence provided in regard to managing treatment I scored 0 points?

From looking at the score chart, I feel I should have scored at least 2 points.

Section 3, Q11: Mixing With Other People

In my application and also at the assessment I stated that:

“I am prone to chest infections, which easily damages my lungs.

A simple cold could result in hospital admissions.

I have to avoid in order to preserve my lung function, any contact with strangers.

I have to constantly ensure that friends and family are free of colds and infections before I can visit them.

This is very frustrating and distressing because it limits my social life significantly.”

I also stated that:

“I need another person to help me mix with other people,”

and that I:

“sometimes find it difficult to mix with other people because of severe anxiety distress.”

Evidence of my claim in me requiring having increased fluids from IVs that can impact on incontinence was shown in:

  • Consultation letter dated 05/10/2016 where my lung function and lung exacerbation was recorded,
  • Consultation letter dated 12/10/2016 where my lung function and lung exacerbation was recorded,
  • Consultation letter dated 30/11/2016 where my lung function and lung exacerbation was recorded as increasingly worse resulting in being dizzy a lot,
  • Consultation letter dated 05/12/2016 where my lung exacerbation was recorded as increasingly worse and showed signs of dyspnoeic at rest, my blood gas demonstrated I had an alkalosis with a pO2 of 8.9 (normally >11),
  • Consultation letter dated 21/12/2016 where my lung function was recorded, showed I was discharged from hospital to continue treatment at home, but unable to get back into my regular routine and required a short course of Prednisolone 20mg daily to see if this would ease my symptoms.

At the interview, it was recorded that I:

“will answer own door and ask for items in a shop. Fairly quiet social life at present, is careful due to being prone to infections, does visit family and friends.”

What the interviewer failed to record was what was actually discussed.

What I actually mentioned was:

“Social interaction I have done in the past include:

  • dog walking daily with my partner,
  • attending a film making group once a week,
  • and visiting my friends on a regular basis.

However, as a result of a serious illness, I had in 2009, my social interactions stopped in fear of exposure to illness.

I have made attempts to kick-start these again, but I’ve not been able to do this.

I know I go to the gym to maintain my lung function, but I don’t go there with a friend and very rarely interact with anyone. I simply do my routine and then go home again where I feel safe away from infection.

I have been seeing a psychologist about this, but won’t take medication to suppress these feelings as I have too much medication to remember to take as it is, plus I am anxious what side effects of the new medication will have.”

In the justification for descriptor choice, it states that:

“functional history shows [I] will answer [my] own door and ask for items in shops.”

I would also like to know how you’ve managed to conclude that being able to answer my door or ask for items in a shop shows I can manage this activity on most days?

You cannot use these two minor activities as a reason to deny points for this part of the claim due to the fact that I have stated I only leave the house when I really have to. Otherwise, I stay at home with little face to face contact with people whether family or friends.

You cannot use:

“MSE – coped well at interview”

as the assessor observed from the beginning of my interview I showed signs of high anxiety, which I failed to hide by constantly talking, something I do a lot when I am anxious.

My partner noticed that I often steered the conversation away from the topic we were talking about and prompted me to talk about the subject I was supposed to focus on.

Again this judgement was based on 1 hour of my life, and also on a good day. I have since had bad days whereby I’ve simply not wanted to go out as a result of anxieties because of my Cystic Fibrosis.

The descriptor states:

“no input for a mental health condition.”

This reason is totally irrelevant as it contradicts what the questionnaire is asking me to put in my answer:

This includes help you need but don’t get!

As stated before and I’ll state again:

“I attend clinic every 4 weeks for my health to be monitored, which includes lung function and weight, and have done so during my entire life. This is evident in my medical history. My medical history also shows I am easily prone to infection.”

This highlights the importance of infection control.

In the letter from my Social Worker, Agnes Tansinda, it states that my:

“CF is a multisystem condition affecting primarily the lungs, digestive system and the pancreas with many of the patient developing further complications with age.

The condition is manageable with treatment and specialist medical support.

Lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

This is evidence that without the support I get from a multidisciplinary team who often advice how to cope with my social life by reminding me there is nothing I can do to avoid infection.

I would like to know-how, based on all the evidence provided in regard to mixing with other people I scored 0 points?

From looking at the score chart, I feel I should have scored at least 4 points.

The outcome for functional restriction affecting daily living

The suggestion that my functional restriction affecting my daily living activities identified in this report is likely to be present and remain for:

NOT APPLICABLE!

How can you justify this about Cystic Fibrosis?

A child in high school studying biology who has no medication qualifications will tell you that Cystic Fibrosis is something a person is born with, there is no cure, and without treatment and support, they are likely to have an extremely low quality of life and highly likely to die very prematurely.

It is provided in my medical evidence, which you clearly haven’t read properly, that my daily living activities due to Cystic Fibrosis does have functional restriction and is a lifetime issue.

From looking at the score chart to how Cystic Fibrosis affects daily living, I feel I should have scored a total of at least 24 points.

Review of claim

I have an annual review of how Cystic Fibrosis affects my day to day living.

I am seen by a multidisciplinary team who carry out various blood tests, lung, liver and kidney functions, review my medication and other care.

This can result in changes made to medication, diet, fitness, etc to suit changes in my condition.

Each year is different and evidence was given by my Social Worker,

“Lung function has continued to decline from 58% in 2014 to 51% in 2016. This decrease lung function causes increased breathlessness, wheezing and lacking in energy to carry out day to day activities of daily living.”

No matter what improved treatment I am given, this will not improve, but will maintain lung function for as long as possible.

If “health professionals” suggest I should have an annual review of my health and adjust treatment where required, then the “unqualified” representatives at DWP, who have only seen me in person for 1 hour of my life should listen to the health professionals who have managed to control my condition for the last 21 years.

I don’t know how you can say you don’t think it’s applicable that my functional restriction will be present at the recommended review.

My condition didn’t disappear for 1 hour. It was present and very noticeable. Especially in my breathing and anxiety issues as a comment, but not recorded by the assessor. I simply feel you haven’t read my questionnaire properly, or the evidence that backs my claim, or listened to what I stated in the interview.

In conclusion, I hope as a result of this letter, which will be backed again by my Health Professionals that you read once more all the evidence you failed previously to look at.

Please remember, it was the DWP press office who stated in an email:

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

Please make sure when reconsidering my claim that you listen to the evidence provided by a Cystic Fibrosis team lead by a Professor who has over 30 years experience,

NOT

Make a decision based on the unreliable and poor observations made in a 1-hour interview

OR

something that has happened in the last 3 months.

Regards

Peter Trengove

Transfer from DLA to PIP 5

Originally published on Wednesday, 12 April 2017

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

Today I received by post a copy of the Consultation Report Form (PA4).

Immediately I telephoned my Social Worker and made an appointment for us to go through the report together with the intention of building a case towards my appeal.

It is very clear from how the report has been carefully written by DWP that they are focusing on how my CF affected me during my 1-hour interview and at present.

DWP has disregarded how CF affects me on a daily basis according to what I stated in my application, which was supported by clinic letters.

The interviewer (Ms Rachel Ford – a nurse since 1991) has omitted from her report details I gave about how CF affects my day to day living.

DWP has included activities they believe to be relevant. For example, they included being able to answer the door as a social activity whereby I’m interacting with people face to face on a regular basis.

Social interaction I have done in the past include:

  • dog walking daily with my partner,
  • attending a film making group once a week,
  • and visiting my friends on a regular basis.

However, as a result of a serious illness, I had in 2009, my social interactions stopped in fear of exposure to illness.

I have made attempts to kick-start these again, but my motivation hasn’t been strong enough to do this.

I know I go to the gym to maintain my lung function, but I don’t go there with a friend and very rarely interact with anyone. I simply do my routine and then go home again where I feel safe away from infection.

In my application and at the interview I stated how I don’t prepare or cook meals anymore and often need prompting or assistance to cook a simple meal.

DWP writes about how I am able to attend the gym. I am yet to find a link between the gym and being able to prepare or cook a simple meal?

In my application and at the assessment I stated how I have difficulty with managing medication. However, DWP has decided I have no issues with managing medication based on my knowledge of what I take, why I take it and what time I should take it.

Although I know what my medication does and what times I should take it, this doesn’t mean I am able to manage my treatment. There have often been occasions I missed medication. I have assistance to manage medication and a lot of supervision via regular hospital visits to monitor my health condition. All in all, this can take more than 3.5 hours a week.

In the report, the interviewer suggested I can walk more than 200 meters based on witnessing me walk only 12 meters.

What I have described so far is a small sample of where the interviewer and DWP have failed in their knowledge of how CF affects a person on a daily basis based on a claim form and a 1-hour interview.

DWP have even stated that the presence the functional restrictions brought on by CF on a day to day basis doesn’t exist.

The next step is I am having a meeting with my Social Worker tomorrow afternoon (Thursday, 13 April 2017) to plan what will be included in the letter of appeal.

My DLA officially comes to an end on Sunday, 16 April 2017.

I am hoping once I have been successful with my appeal I get a back payment of what I am rightly entitled to.