Written evidence from Name Withheld (PEA0312)

1. We live in Scotland and as a family have recent dreadful experience of the PIP system. I am my mother’s carer. She has Chronic Cluster Headache (CCH) which means for parts of every day her functioning is seriously impaired physically, visually, and cognitively and she suffers from the wider impact of this. CCH is also known as ‘suicide headache’ because the excruciating pain levels are known to drive sufferers to this.

2. My mother worked for the DWP for 25 years until she was dismissed because her CCH was preventing her from being able to carry out admin office duties. The Occupational Medicine report confirmed ‘a substantial and long term adverse effect on normal day to day activities’, that due to incapacitating symptoms she was unfit to undertake gainful employment, and she met the high HMRC threshold for severe ill health. She then claimed ESA and placed in the Support Group.

3. My mother claimed PIP in 2015 and was awarded Enhanced Daily Living. Although she knew she should have also been awarded Enhanced Mobility, she could not appeal because she was to unwell to do it alone, did not have anyone to help with this, and was too housebound to access assistance from welfare agencies.

4. Although her condition is confirmed lifelong with a poor prognosis the DWP decided to review my mother’s PIP a year early. In the review form she explained her condition had worsened.

5. Because she was highly likely to become stranded in an attack on the way to the assessment centre I drove my mother there. Also I wanted to ensure she got there and back home to her large oxygen cylinders as soon as possible because we could not carry the amount of oxygen my mother needed to be out safely. At 15 litres per minute portable cylinders run out quickly and even two of these might not be enough to treat one Cluster Attack. In the Report the HP stated my mother had driven herself there and used this falsehood to deny she has problems.

6. The HP report in no way deals with what the Cluster Attacks do to my mother and scored her zero points. The Report is riddled with omissions and is factually incorrect. For example: the HP states that my mother does not attend Neurology more often than every 18 months-2 years. In fact my mother attends Neurology every 8 weeks to have Greater Occipital Nerve Blocks administered. Either I or my Grandparents drive her to and from the hospital.

7. These are some extracts from my mother’s witness statement to the Tribunal:

1. ‘The HP has completely failed to consider or research the correct medical condition which is a very specific neurological condition’

2. ‘HP in history (CCH symptoms) has made no mention of the autonomic symptoms – omission - in fact I stated in detail about the my eye streaming and eyelid swelling & drooping, my nose running, my face drooping and becoming paralysed all on the side of the CCH attack.  I also advised my heart races, breathing becomes erratic and my vision blurs.

3. ‘HP states in functional history (washing & bathing) ‘feels too fatigued to have a shower every day` - omission – in fact I stated that having a shower is an attack trigger for CCH and so I avoid showers.’
4. ‘The HP has repeatedly and untruthfully stated there is no evidence of difficulty when in fact the diagnosis alone is compelling evidence as it is not possible to have CCH and function reliably.’

5. The HP has completely failed to consider reliability, which is required to comply with the law.  It is incredible that this has been ignored when assessing a condition that presents in the form of unpredictable, severe neurological attacks.

8. The Report does not comply with the DWP PIP Assessment Guide for HPs and is based on a snapshot of my mother at the time of the interview (when she was not in a cluster attack). The HP’s reasoning does not identify, evaluate, and medically reason what happens to her functioning during the cluster attacks, recovery, and periods of residual cluster pain, and does not apply the correct criteria for PIP.

9. The DWP Refusal letter removed my mother’s PIP award. All actual evidence from three doctors had been ignored without explanation. Her GP, the Consultant Neurologist (CCH Specialist), and the Occupational Health Doctor had all confirmed she has daily severe functional difficulties in all areas but the DWP decided that the HP knew better.

10. For Mandatory Reconsideration my mother’s Specialist Consultant provided a detailed report specific to the 12 PIP Activities that completely disagreed with the HP and once again confirmed that she has severe functional difficulties in all areas.

11. Within a few days the DWP issued a second refusal that simply ignored the detailed evidence from my mother’s Specialist. The reasons given for the refusal relied extensively on the HP snapshot of her. The DWP even applied a criteria test of ‘the majority of the time’, which I understand is not what the law requires. Still the DWP did not spot that the HP had not explained why she disagreed with the Doctors when actually she is required to do so.

12. This time my mother had found someone to help her and she lodged an Appeal to the Tribunal. The DWP then provided their Submissions to the Tribunal. These were mainly:

1. Stating that the HP had ‘knowledge of the medical conditions’ (while it could be seen that her opinion was in direct contradiction of Specialist opinion).

2. Continuing to insist that the snapshot of my mother at the time of the Assessment proved she had no problems (I am told that both case law and the DWP PIP Assessment Guide confirm that a snapshot is not acceptable evidence of ability and this is especially true of a condition that inherently causes extreme fluctuation of functioning ability over every 24 hour period)

3. Still applying the unlawful threshold ‘the majority of the time’ (I am told that case law confirms that ‘the majority of the time’ is not the lawful threshold test)

13. How is it possible that the DWP staff preparing the DWP’s case for Appeals don’t know the law?

14. During the extensive preparation of her Appeal case my mother’s Specialist Consultant yet again provided confirmation that her condition is intractable, and unpredictable, frequent, and severely disabling in nature. This time someone in the DWP must have actually read this because eventually my mother’s Appeal representative found out by chance from the Tribunal that the Appeal no longer existed because the DWP had decided to award her Enhanced Daily Living and Mobility and had closed the Appeal.

15. The DWP had not bothered to notify either my mother or her representative of this, so she had continued to expend weeks of precious energy working on the Appeal. In the end the representative had to contact the DWP to get them to provide her with the Award she should have had months earlier.

16. Evidence of all the above can be provided if required. Thank you for reading this. The whole situation caused distress and hardship. It is very stressful to know that while we battle with the condition daily, my severely ill and disabled mother will keep having to go through this process even though her condition is lifelong and the Specialist expects no improvement.

In Conclusion:

17. My mother has asked me to add this statement from her. ‘Specific to my particular and notoriously devastating medical condition (CCH) is the nickname Suicide Headaches because CCH does drive people to take their own lives. However, I believe that it’s not just the level of pain that drives CCH sufferers to suicide; it’s the knowing that no-one other than fellow sufferers can comprehend the pain levels, and it’s the incompetence, ignorance and dismissive attitude if those we are supposed to trust with our ‘care’ combined with lack of interest because it’s a little known nonfatal condition. However it’s exactly these issues that in my mind contribute to the name Suicide Headaches. It’s then easy to blame it on the pain when responsibility may lie elsewhere. Sufferers and Specialists all know this is not a ‘headache’, but fighting constantly to educate others who should know is exhausting, humiliating, and demeaning. The intransigent ignorance I and other sufferers have experienced within the PIP system is inexcusable. No one should be allowed to assess the impact of something they know nothing about and therefore cannot correctly interpret.’

November 2017