How are you doing?
In general, health-wise, things are as good as can be as expected given my condition.
However the topic I am writing to you about affects anyone with a disability, not just those with Cystic Fibrosis (CF).
As you are personally aware, I have previously written with news about CF drug trials that could lead to something hopeful, resulting in improved quality of life and possibly as close to a cure for this genetic disorder.
Like with any other illness hope lies with these drug trials. However there is a side to a certain type of disability that's looked at with a frown. The main reason is these disabilities such as CF aren’t as obvious based on the general appearance of the sufferer. This is classed as a hidden disability.
I’ve lost count for the number of times I’ve heard a CF person, who has a blue badge, state they were challenged by the general public when they’ve parked in a disabled bay at the shops.
Most of these comments are taken with a pinch of salt due to the naivety of the challenger. We understand these people are not professional bodies in health care and therefore don’t see the effects CF has on the daily life of the sufferer with the treatment and hospital visits they go through.
So far I have mentioned how non-professional people look at those with CF and don’t understand what is happening in our world.
However as I, and many other CF sufferers have found, the ignorance doesn’t just lie with the general public, but also those who claim they are qualified health professions. In this case I am talking about those who work or represent the Department for Work & Pensions (DWP).
For me it all began on Saturday, 31 December 2016 when I experienced that dreaded moment all disabled people have or will endure at some point. It was that moment when a brown envelop was posted through my letterbox containing the letter stating my Disability Living Allowance (DLA) was coming to an end in favour of the new Personal Independence Payment (PIP).
The letter set off my anxiety as I had heard so many bad experiences from fellow CF sufferers about their ordeals whilst applying for PIP.
The timing of receiving this letter on New Year’s Eve made things worse because with the New Year’s Bank Holiday commencing, I knew I had to wait until Tuesday, 2 January 2017 before I could telephone the DWP to start the application process for PIP.
Although I did my utmost best not to let this get to me, throughout the New Year’s Eve party I attended, I appeared to be coping on the outside, but my mind was working overtime about the application for PIP and bad experiences I’ve heard. I hoped I wouldn’t be another victim to the slander DWP provide in their reports about CF sufferers.
Tuesday, 2 January 2017 came and I started the process of applying for PIP by phoning DWP as instructed. I rang the number given in the letter at 10am and a computer voice told me to phone back in 4 hours whilst a technical issue was being fixed.
At 2pm I rang again. This time a male human voice asked if I could call back in another 2 hours due to the computer he was using not working.
At 4pm I rang once more. This time a female human voice was speaking to me. However the quality of the telephone call was poor to the extent I had to ask her to speak loudly and slowly so I could hear her.
As confirmed by what the letter stated would happen in the telephone call, I was asked to confirm my personal details, and agreed to a statement that was read out to me. I was told I would receive an application pack in the post.
Once the telephone call had ended, I rang my Social Worker at the CF specialist unit in Wythenshawe Hospital to let her know what had happened.
I was instructed that once the pack had arrived, to make an appointment with the Social Worker where I would receive help with the application.
The application pack arrived and I realised most of the evidence to support how CF affects my daily living was to include CF clinic letters, repeat prescription and a supporting letter from my Social Worker that gave an insight about how CF affects my daily living.
On Tuesday, 10 January 2017 I sat with my Social Worker who helped me complete the application form.
This took a total of 3 hours to complete due to the amount of information I had to include about how my CF affects my day to day living and also mobility.
I never ever expected to write the answers I did. Not because they weren’t true. Everything I had written was very true. The reason why I never ever expected to write what I did is as a sufferer of CF, I have grown up with the symptoms and didn’t truly know until writing this application how I compared to a healthy person. Nor did I realise the extent in the seriousness of CF. Mainly because it's something I never really stopped to think about.
All I knew from personal experience the importance of the treatment program prepared by the CF Care Team, which includes Doctors, Nurses, Social Workers, Psychologist, Physiotherapists, Diabetic Consultants, Pharmacists, Surgeons...the list goes on.
Although deep down I knew had I not taken the treatment program given I would not live a long life, I’ve never had to think about until putting it in writing as I did with the PIP application. If I am honest, having to discuss this with my Social Worker was the hardest realisation I had to face to the extent it frightened me resulting in me working as hard as I can to keep myself fit and healthy, which with a lung function of 41%, this isn’t easy.
With the application complete and sent with supporting evidence from the CF Care Team, I received a letter from DWP dated Monday, 20 February 2017 with my appointment for a consultation with a “Health Professional”.
The appointment date set was Tuesday, 28 February 2017, which I couldn’t attend due to an existing appointment at the CF clinic. Immediately I telephoned the DWP about this and the date was changed to Thursday, 9 March 2017.
I was encouraged to take a companion such as a relative, carer or friend for support. Luckily I did due to my anxiety. I was so anxious I thought I forgot to take relevant identification with me. Plus I was so nervous I never stopped talking.
As she greeted me, the assessor claimed to be in the nursing profession since 1991. The assessor commented how I showed signs of anxiety and reassured me that most of the assessment would be based on what I wrote in my application. I was informed most of the decision making was based on information provided by the number of letters from my consultant, which was evidence to my health claims stated in my application.
During the assessment I was constantly side tracking during the interview and my companion brought me back to the topic we were talking about.
After the assessment my companion and I felt the interview went really well. I was told by the assessor I would get the outcome of my application in the next 6 to 8 weeks.
Today, Saturday, 25 March 2017 I received a letter from DWP with the result of my application for PIP.
The letter states that PIP will not be awarded and that my DLA will come to an end.
DWP “looked at all of the information available including the ‘how your disability affects you’ form and the information provided by the letter from your consultant”, and the 10 activities for the daily living part of PIP and 2 for the mobility part, which include:
- Preparing food
- Eating and drinking
- Managing your treatments
- Washing and bathing
- Managing your toilet needs
- Dressing and undressing
- Mixing with other people
- Making budgeting decisions
- Planning and following a journey
- Moving around
Part of the evidence given by the CF Care Team included a chest infection I had in October 2016 that took 3 months to treat and a further month to recover from. My lung function at best is about 45%. This reduced down to 31% when I was at my worst with the infection. Although this rose back up to 41% upon recovery and since rose again to 49% as a result of a new treatment, had I not been treated at all for this infection my life expectancy would have been affected quite considerably.
As you have probably realised from information given so far, the DWP haven't based their decision on the letters, medical reports, etc the hospital provided. It is in my opinion the DWP haven’t read the evidence properly or at all. Otherwise I would not have scored zero on any of the bullet points shown above.
I was informed by the assessor the decision would not be based on the assessment, but on the written evidence given by my consultant. This was something I was relieved on because the assessor saw me on a good day.
Since the assessment I've had bad days, which mainly includes not leaving my house unless I really have to in fear of exposure to illness. Plus I’ve had no motivation. I even have to force myself to get ready to go the gym because I know I'll basically become ill again if I don't go.
Today I was to do a quick shop for mother’s day, but again had no motivation. All I wanted was to stay in the safety of my home. Whether I be motivated tomorrow with the weight of my PIP application outcome lying heavy on my shoulders is a question yet to be answered.
The only hope I have at present is that by appealing the decision, this will result in the answer I had hoped on this occasion. I have until 16 April 2017 to do this before my DLA comes to an end. A benefit I used to cover health costs that comes as a result of having CF.