Mr Rahul Patel CO Mrs Meeta Patel 33 Chard Drive

Mr Rahul Patel

C/O Mrs Meeta Patel

33 Chard Drive

Luton (BEDS)

LU3 4EQ

June 2nd 2019

Her Majesty’s Courts and Tribunals Service (HMCTS)

Social Security & Child Support Services

Administrative Support Centre

PO BOX 14620

Birmingham

B16 6FR

Reference: SC914/19/00229

Reference: PC668171D

I am writing to you to in response to your letter, dated May 21st 2019 relating to Tribunal Caseworkers Directions Notice. I am surprised that you have not received anything from DWP because we received a copy of their response to HMCTS on April 26th 2019 (date on DWP letter).

Included with this letter is a copy of DWP response.

Reading DWP’s response and defence of their decisions is discriminatory because it is all based on an assessment which according to DWP provides enough information to form an opinion of daily living and motability needs. A 60 minute assessment cannot determine lifelong needs and care and I refer back to my argument:

• In the Observations Section, comments here are unjustified because it is based on an assessment with a predefined set of questions and exercises.

Yes, he was fully orientated, yes, he was able to answer questions, calculate simple problems, Rahul was not withdrawn, he was dressed properly, he was not breathless or fatigued, his muscles and movement were good. What are assessors expecting during these face-to-face consultations? Someone on crutches or wheelchair, someone incapable to talking, someone incapable of walking? Rahul has a complex and rare heart condition, which affects him emotionally, physically and mentally.

• In the Mental State Observation Section, the comments here again are unjustified because Rahul could hold a conversation without being prompted.

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What was the assessor expecting? Someone who could not hold a conversation with another person? Rahul has a complex and rare heart condition, and has suffered a lot in his years and its affects are deep rooted than what a facial expression or body language shows.

o Learning to cope with his restrictions and being different from his peers is emotionally challenging for Rahul. Recognising that you have a life altering condition is of course devastating for most young people. When you learn that your life will be much shorter than your family, peers and friends, the trauma of adolescence, young and full adult life is magnified.

o There is also mental health issues, especially learning to live and cope with a Complex Non-Correctable Heart Condition. The Neuropsychology and DSA report clearly state Rahul has delayed learning and requires support from education to home life. Just because Rahul was able to complete some mental exercises during the face-to-face assessment, the assessor presumed his mental state to be fit and healthy. Rahul’s residual neurological deficit remains following his cardiac arrests. Brain damage does not get better overnight.

• During Physical Examinations on that morning Rahul was able to complete the tasks set. It was first thing in the morning and Rahul was rested and alert, what was assessor expecting? Someone completely fatigued, restless, emotional, tense, etc.?

o Rahul is not restricted to a wheelchair, he can walk but ultimately his lack of consistently maintained mobility is his greatest disability. He would be further restricted if he had to rely on public transport and will get drained of energy that getting from A to B would wipe out his days energy levels.

o Rahul’s energy levels are more restricted than others BUT every day they are far less than his peers. When you only have Half a Heart doing the job of a whole heart, affects the energy you have to run your body, move, concentrate, even eat and digest food.

o Rahul’s heart needs regular assessment and a balancing of treatment and medications. His team of Doctors (St. Thomas Hospital, London) assess his heart function regularly throughout the year and change medication and offer further treatment as necessary. As he, progresses into adulthood and further physical growth, there will be a greater strain on his heart function. Arrhythmias, chest pains and weakening heart function are common problems

The Laws/Acts that DWP has used Welfare Reform Act 2012 and Social Security (Personal Independence Regulations) 2013 to justify its decisions are motivated by them, rather than thinking if they actually apply to an individual’s support needs:

Rahul does have delayed learning and requires support from education to home life so it does take him longer to complete things compared to those who are free from Physical or Mental Conditions.

Rahul has TWO aids/devices inserted through surgery in his body 1, a Pacemaker and 2, an sICD Subcutaneous Implantable Cardioverter Defibrillator) which keep him functioning and without either aid/devices and medicines Rahul health would deteriorate rapidly causing him to suffer badly and possibly even die.

The Pacemaker and sICD are not worn as an when or function as and when, they are on 24/7 monitoring Rahul’s heart rate, keeping him alive and I do not think DWP understand the significance of this part of Rahul’s daily living and motability needs.

Since the start of the PIP, application for Rahul there is has been an air of prejudice because he has NO Physical or Visible attributes that can be readily identifiable as limiting his functions on everyday tasks and unless DWP can see this, then the person being assessed must be free from any additional support needs.

How can these appointed assessors even understand the complexity of a disability or what a person goes through when they are following a set of procedures for the assessment and are formulating an opinion on that face-to-face consultation? They do not live the life of a person requiring additional support, so this view is very biased because it concludes that a person with disability can or cannot do things according to DWP criteria without even understanding what everyday life is like for an individual suffering from medical condition.

DWP are evaluating Rahul using assessment criteria that would be better suited for an elderly person in heart failure. They have NOT assessed him as a young person with a complex heart condition and my opinion the assessment tools should be different for young people in heart failure as there are going to Clear and Fundamental differences in both age groups.

Whilst Specialists and DWP can give their opinions, they are nothing but opinions because of NOT fully understanding the day-to-day challenges Rahul faces either physically, mentally or emotionally. Whether it is a Specialist Cardiologist (St. Thomas Hospital) or a DWP appointed specialist, these people only spend very short amounts of time assessing Rahul and will never fully understand what living with Hypo-Plastic Left Heart Syndrome is like.

In the UK a large number of babies are born with Hypo-Plastic Left Heart Syndrome and many do not make to through their teenage years. Rahul is the oldest patient with Hypo-Plastic Left Heart Syndrome under the care of St. Thomas Hospital (London) and he has been extremely lucky to have reached 21 years of age, with only 1 MAJOR incident (Cardiac Arrests in 2013), since his 3 open heart surgeries in the first 30 months of his life.

Having confidence in PIP Application process is concerning because the DWP assessment criteria and scoring is very generic and one that encapsulates all conditions without truly understanding an individual’s day-to-day challenges. We as a family are being forced to prove that Rahul actually has Hypo Plastic Left Heart Syndrome and how it affects his everyday life and even though we have provided plenty of evidence to support this application, it has honestly been taken far too lightly.

Your impartial review into this application would be greatly appreciated.

Meeta Patel

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