Tuesday, 19 December 2017

Cystic Fibrosis – Part 2: Transfer from DLA to PIP 9

Friday, 12 May 2017

Cystic Fibrosis – Part 2: Transfer from DLA to PIP 8

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 were 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 given, whether this be the original or new evidence provided, the evidence is being ignored and decision is being made based on a 1 hour interview, not a life time 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

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

Wednesday, 12 April 2017

Cystic Fibrosis – Part 2: Transfer from DLA to PIP 6

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 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.

Saturday, 1 April 2017

Cystic Fibrosis - Part 2: Transfer from DLA to PIP 5

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

Below is an email I've just sent to the Labour Leader, which includes a letter of complaint about DWP & PIP claim. The letter contains the contents of:
  • CF - Part 2: Transfer from DLA to PIP 1
  • CF - Part 2: Transfer from DLA to PIP 2
To Jeremy

Please find attached a letter of complaint in regards to my claim for PIP and the poor decision made by Diane Chennell to reject my claim based on the 1 hour assessment rather than all the evidence I gave with help from my Cystic Fibrosis specialist in support of my claim.

The letter includes a diary of events and experiences during my claim for PIP and a copy of the decision letter, which I have inputted my thoughts for each of the bullet points raised as part of my PIP claim, which I think will also be of interest to Helen Jones.

Actions I have taken so far is getting this out in the public domain as far and wide as possible with the help of Facebook, Twitter and my blog page, mycamstudionetwork.blogspot.co.uk.

I have also had an article published in the Warrington Guardian and wrote an email to the Cystic Fibrosis Trust and to my MP, Helen Jones, who I have copied into this email.

I am currently waiting for the Assessor’s Report to be delivered by post before I can commence my case for appeal with the help of my Social Worker and other members of the care team at the Manchester Adult Cystic Fibrosis Clinic at Wythenshawe Hospital, Manchester.

I’ve had so many fellow CF sufferers and their relatives speaking out about their experiences with PIP claims.

In one case a claimant stated he has severe osteoporosis of the spine and can’t stand up due to the severe pain this causes. He said the assessor tried to make him stand up despite being told of his condition in the form of letters from his consultant.

Another CF sufferer whose CF is so severe they had a lung transplant was told by DWP due to them having the transplant, they no longer have CF and therefore no longer disabled. In fact they still have to take the treatment they were on before. Having a transplant doesn’t cure CF, but makes it better on the breathing whilst allowing the sufferer to focus on the other aspects of CF whilst maintaining their lungs with drugs that prevents their body from rejecting them.

I am aware I can only speak for myself, but I thought I would share a couple of cases I’ve been saddened with reading from other people’s experiences.

I hope any publicity and awareness made by my complaint and actions taken so far will go towards making CF stand out as a severe disability we live with and that DWP open their eyes in the effects the PIP claim is having on the quality of life of CF people.

We hope to have your support in this.

Yours sincerely

Peter Trengove
I didn't think there would be any issue for any CF person with their PIP claim due to all the evidence they have to support their claim. However I should imagine this is no different to any other disabled person.

I basically got fed up of all that's happened and hearing what is happening to others has pushed me to take action like this.

This needs to stop and the only way that will happen is by us all taking control and pushing the government.

At present I feel we are paying our taxes to be treated like sheep. It is about time roles were reversed we tax payers became the Shepherd and take control of our flock.

Cystic Fibrosis - Part 2: Transfer from DLA to PIP 4

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

Below is an article from the local Warrington Guardian...
1 April 2017 | Adam Everett

Peter Trengove, who has Cystic Fibrosis,
has been told that he will not be awarded
Personal Independence Payments by
the Department for Work and Pensions.
A CYSTIC FIBROSIS sufferer whose lungs function at as low as 31 per cent capacity has been told that benefits he receives in order to help pay with healthcare costs will be stopped.

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

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

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

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

On Saturday, Peter, whose lungs function at between 31 and 45 per cent capacity, was told that his DLA will end next month and that he will not be awarded PIP.

He said: “According to the unqualified professionals at the DWP, Cystic Fibrosis isn’t a disability and has no effect on the sufferer at all.

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, 28 March 2017

Cystic Fibrosis - Part 2: Transfer from DLA to PIP 3

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

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

Thank you for contacting the Cystic Fibrosis Trust helpline.

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

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

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

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

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

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

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

Best wishes"
A copy of all the guides I've used for making a PIP claim, information passed to me from the CF Trust and also a template letter requesting a Mandatory Reconsideration can be found here at this link.

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

Please refer to your Social Worker for assistance.

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