EDS UK participates in PIP consultation

• 
• 22 April, 2022


• 
• EDS UK news

We were recently contacted by the stakeholder engagement team at Capita, an independent company working with the Department for Work and Pensions to carry out Personal Independence Payment (PIP) assessments across England and Wales.

The team wanted to find out more about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) and how they affect individuals and invited us to ask any questions we had about the assessment process. They were also keen to discuss how we can work together in the future.

The meeting was very positive and we’d like to thank everyone who sent questions and suggestions. These are summarised  below.  Going forward we will be providing a template of an overview of EDS and HSD for assessors to use when completing assessments with patients with the conditions.  This allows them to have quick fire knowledge about the variability of the conditions, the impact they have on people and how their effects can be invisible.  The hope is that this provision of information will produce a much more accurate assessment.  Additionally, we have been asked to do an awareness session with the team leaders to feed down to their teams, including a recorded webinar for staff to access and saved slides.  We hope this increased awareness of EDS and HSD will assist with future assessments, making the process much easier and less stressful for those having to go through it.

We asked the following questions, which we summarised from the feedback we received:

EDS is a variable condition, it often fluctuates and differs from person to person. Is this considered during the assessment and what is the impact if an individual is having a good day?

With the information from the template as well as the awareness session the hope is that there will be understanding of this variability of the condition on a day to day or week by week basis. This can be supported with a claimant diary and supporting statements from friends, families, carers, partners, and colleagues (those who see the claimant on a daily basis or regularly) to demonstrate the issues the claimant may face.

Individuals with hypermobility will have a good range of movement, this makes the physical examination inappropriate as although an individual may be able to lift their arms above their head or place their hands flat on the ground, it does not mean that they do not have pain, difficulty with movement and other issues. How can this be taken into account?

This will be fed back to the team with immediate affect with assessors notified that range of movement does not reflect an absence of disability. There are currently changes going on as to whether there is any need for physical assessment in general, as there are many conditions where it’s unnecessary.

Recording meetings can be helpful for both assessors and the assessed, but it can be difficult to execute with the correct equipment and to arrange beforehand. How can be this changed?

This process has now been updated. You can ask for the meeting to be recorded if it is a telephone or face to face meeting. This will be recorded by the assessor and shared with you.  Alternatively, you are now allowed to record your meeting using items such as a mobile phone. Alert the assessment centre beforehand that you will be doing this (phone a few days before), and the assessor will also record the meeting.  You do not need to record the meeting with a cassette player and two copies anymore. Additionally, you are able to record a video session on your mobile but the guidelines for an assessor to record the video meeting have not yet been finalised.

EDS is an invisible condition, with individuals often looking ‘well’. How is this taken into consideration during the assessment? Additionally, if an individual has presented themselves well, why is this often counted against them?

With the information from the template and the awareness session, the hope is that this is understood and taken into account during assessments.  EDS being an invisible condition will also be fed back to the teams, as it’s something which can be taken into account immediately but more in-depth information about why this is will be included in the template and awareness session.  Capita were saddened to hear that individuals were discriminated against during their assessment for being presentable and will be sharing this feedback with the team to educate them on this matter.

How do lifetime awards  work and would EDS be a condition eligible for this? Also, if an individual has gone through several tribunals and been rewarded PIP why do they then have to go through the process again?

Lifetime award has now changed to 10-year reward with light review.  As no one has reached the 10-year mark yet with PIP replacing DLA, this means that there has been no outline of what the light review will mean.  However longer review periods are currently being implemented with understanding of the distress that the assessments can cause as well as the impact of the current NHS waiting times.  The concern of having lifetime awards for conditions is that an individual may be awarded standard PIP, deteriorate, and due to being on lifetime award, would then not be eligible for higher rate.  As well as EDS effecting everyone differently, the assessment is based on the individual’s day to day experience with the condition and the effect that this has. The tribunal process is different from PIP so it is difficult to link them together to prevent it occurring again. However if previous tribunals have occurred, they should be included in the assessment material when reapplying.

We also discussed that EDS is not usually overseen by an individual consultant and often patients do not have a medical professional overseeing their condition, or they are managed by their GP or a multi-disciplinary team.  We have asked this to also be taken into consideration.  We discussed difficulty in accessing assessment centres and how they’re often inaccessible.  Information is now provided on the website to outline where assessment centres are, directions, parking and accessibility.  If an individual deems this not to be accessible they can call and ask to change to a phone or video appointment and a decision is made within four days of whether this is possible. Directions and parking will also now be included in the assessment pack.

We hope with the planned awareness session, EDS template and joining the stakeholder forum to provide ongoing feedback, that the knowledge of EDS and HSD will make the PIP process less traumatic and more simple for those in the EDS community.  We look forward to developing this relationship and providing ongoing education about EDS as more about the conditions becomes known.  We thank the community for your questions and suggestions and we will provide further updates in due course.