Wednesday, 19 April 2017

Cystic Fibrosis – Part 2: Transfer from DLA to PIP 7

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 life time.
  • 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 supported 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 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 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 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 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 my management of my fitness safely in accordance to 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 much 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 a 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 were 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 am 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 me 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 tools 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 a 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 double 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 myself 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 my management of my fitness safely in accordance to 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 fatigue 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 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 bed clothes 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 fatigue 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 life time. 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 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 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 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 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 suppose 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.


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 life time 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 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 commented, 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 at 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