This may be of help to some

My other half suggested sharing my mandatory reconsideration letter as she believes that it is written very well and in a way that gets the thought process going and gives certain start points that may be helpful - it worked for me.  Apologies for the poor foormatting and "admin" please delete if this is not appropriate.

Dear Sir or Madam,

I am writing to you to request a Mandatory Reconsideration of the decision letter dated 5th December 2016 where I was awarded 0 points in my claim for Personal Independence Payment.

By way of background, I suffer from Chronic Cluster Headache (CCH).  Cluster headache [CH] is one of a group of headaches known as trigeminal autonomic cephalalgias [TACs].  It is a primary headache [a headache in its own 0right, not caused by or a symptom of another illness] that causes severe, debilitating pain. It is generally considered to be the most painful medical condition known to mankind and most female sufferers describe the pain as being worse than childbirth. The pain is usually focused around the eye socket/temple, sometimes spreading to other parts of the head like the ear, jaw, forehead and neck. The pain is usually on one side of the head, although it can switch sides between attacks, and rarely can change sides during an attack.  At present, it is a lifelong incurable condition.

Sufferers experience the following symptoms during an attack:

• Reddening and watering of the eye 

• A runny or blocked nostril 

• Drooping/swollen eyelid 

• Constriction of the pupil 

• Flushing and facial sweating

• Restlessness/rocking/pacing up and down

  I was previously in receipt of Disability Living Allowance at the higher rate for both the care and mobility component and this was awarded to me indefinitely. On this basis and taking into account my health, I was surprised and disappointed to be awarded 0 points at my assessment for PIP and feel that this decision is incorrect.

  I disagree with this decision for the following reasons:

• I would respectfully submit that the HCP did not adhere to the PIP assessment guide on the .gov website.  The guidance states that “Before selecting a descriptor, the HP must consider whether the claimant can reliably complete the activity in the manner described in the descriptor, taking into account where they can do so:

• Safely

• To an acceptable standard 

• Repeatedly

• In a reasonable time period

With reference to section 3.3 of your publicly available PIP assessment guide “Central to the application of all the activities within the PIP assessment is a consideration of the manner in which they are undertaken. If an individual cannot reliably complete an activity in the way described in a descriptor, then they should be considered unable to complete it at that level and a higher descriptor selected. For example, a claimant may be able to complete an activity unaided, but in a manner, that is unsafe; they require supervision in order to do so safely and therefore should be awarded the higher descriptor which refers to supervision”

Looking at the consultant report form PA4 V3, in the “justification for descriptor choice” box, the HP uses phrases such as “it is likely that for the majority of the time”, “it is likely that he would be able to”, “it is likely that most of the time”, “the evidence suggests that most of the time”.  This is just a few examples but it is appears to me that the HP has not applied the “RELIABLY” criteria that is explained quite clearly and mentioned no less than 32 times in the guidance document on the ,gov website and, “most of the time” is only used on one occasion in the document.  One point in particular that I would like to make is that the HP who carried out my assessment gave me the impression that “most of the time” was more than 12 hours of a day and not “on more than 50 per cent of days in the 12-month period” as stated in the guidance that she should be using.  If I had known this information, then my answers would have been different.  In fact, they wouldn’t have been different but would have been assessed in a different way and been a true reflection of my health condition and the impact that it has on my life.

• I believe that the report generated by the Capita Healthcare Professional is an inaccurate record of the events of my assessment carried out on November 22nd 2016.  To provide an example, the report states “You informed the assessor that you needed to stop the assessment as you could feel the onset of a headache.” This is incorrect and at no point did I mention a headache.  It was actually the assessor who asked me if I was ok to which I replied, “I don’t know”.  She then offered me the opportunity to “take some time”. I took this opportunity to have a drink, cool down and take an injection as a precautionary measure;

• It would appear from the above that assessor must have noticed a change in my behaviour or the way that I was responding to her questioning.  This highlights to me that, although I wasn’t having a full-blown attack, the assessor must have recognised a change in my ability to communicate and I’m sure that under these circumstances, good communication is essential for her to reliably assess whether I can carry out any activity safely, repeatedly, in a reasonable time period and to an acceptable standard.  For your information, I suffered with a shadow headache and someone suffering with chronic cluster headaches can, and more often than not, will have such a headache for the long periods of the day.

• In an attempt at explaining these shadow headaches, it would be helpful if you could consider them as shadows of no severe head pain but the clumsiness, lack of coordination, concentration and nagging background headache similar to a person with depression.

• I would also like to challenge the statement in the decision letter “this is consistent with your description of a typical day”.  During the assessment, I repeatedly told the assessor that there is no such thing as a typical day when living with Chronic Cluster Headache.  If I had been aware of the publicly available guidance for healthcare professionals, I would have highlighted the assessment criteria mentioned above and had the opportunity to answer the questions in a manner that would clearly explain the daily difficulties that I have.

• As one final point, I would like to direct you to the attached report from my consultant dated 22nd December 2016 for the following quote “I must admit that all the cases that I know of of cluster headache that have gone to tribunal recently have had their cases overturned and the benefits have been awarded. In some instances, I am also aware of tribunal judges being extremely angry about the nature of the assessment system when clearly these patients have severe disability and their disability is being overlooked. This is genuine organic and severe.”

  It would be helpful for you to contact the health professionals in this letter to gather further evidence to assist you in the reconsideration, as they will be able to provide you with an up to date and accurate picture of my current circumstances:

XXXXX Medical Centre

XXXXXX Road

Wexham

po13 7hu

I have advised these professionals that I am requesting reconsideration and that you may be in touch with them regarding the collection of evidence. 

I would be most grateful if you could inform me of progress in this matter and advise me whether I need to take any more steps to deal with this as soon as possible.