Written evidence from the Cystic Fibrosis Trust (HAB0050

 

The Cystic Fibrosis Trust is the only UK charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. Cystic fibrosis (CF) is a life-limiting condition that makes it difficult to breathe, causes vulnerability to infection and restricts your ability to fulfil your ambitions. For those living with cystic fibrosis, medication, physiotherapy, and general health all must be considered when planning the simplest activity and being unwell frequently interferes with work and education. Our work includes several projects to help us achieve our vision of a Life Unlimited for people with cystic fibrosis - such as more innovative and impactful research programmes that accelerate breakthrough science and therapeutics; greater support to clinical teams in the NHS and improvements in the way care is delivered; and better information, support and advice that enables even more people with cystic fibrosis to make the right choices for them at all stages of their lives.             


 

Summary

People with cystic fibrosis in receipt of benefits most commonly rely on Disability Living Allowance or Personal Independence Payment. Ideally, those with long-term conditions should not be required to undergo repeated reassessments when their condition is unlikely to change. However, the Cystic Fibrosis Trust believes the way in which people are currently assessed and re-assessed for benefits could also be greatly improved to reduce anxiety by making the right decision the first time and removing the need for appeals.

Improvements to assessments for health-related benefits

Q1. Assessments are often conducted by people with little to no experience of cystic fibrosis or the realities of life with such a complex, life-threatening condition. People with CF often look well on the outside and because they are born with the condition, which fluctuates and progressively gets worse, the burdens become normal to them over time. The severity of their condition and need for financial support may not be immediately obvious to an assessor. The Cystic Fibrosis Trust has worked with assessors to provide information about the condition and highlight these problems - but all too often people with CF will need to appeal a negative PIP decision, with the success rate of 84% indicating that the assessment process is flawed.[1]

The nature of the assessment itself also needs to change. It focuses on the limitations by which disabled people are measured but this is at odds with the medical advice given to people with CF to push themselves as far as possible, for as long as possible to maintain health. For example, the gym is commonly used as a form of physio even when people have advanced CF. Many people with CF tell us that gym membership is what they spend their Personal Independence Payment on, and that without it their health would suffer.

Relying on clinical input to make benefits entitlement decisions without separate assessment

Q6. A CF team gets to know their patients incredibly well, both medically and holistically. It is essential that their evidence is given appropriate consideration. Much of the information required for assessments is routinely collected by the specialist multidisciplinary cystic fibrosis teams who know their patients best. Claimants are likely to experience a fairer outcome if this written evidence was looked at during the initial paper assessment to prevent it needing to go to in person assessment let alone to appeal, than if they are assessed by those without specialist knowledge. There is no advantage to continuing further assessment by someone less qualified than an expert team who have specialist expertise. Making the right decision can also reduce pressure on clinical teams which may result from worsened health if people with CF feel they cannot afford to attend vital hospital appointments.

 

33% of survey respondents (Cystic Fibrosis Trust PIP and DLA Survey 2021) said they use their benefit award to travel to hospital appointments and inpatient stays.

Tribunals favour the claimant due to lack of specialist knowledge

Q7. There are too few occasions where the right PIP assessment decision is made the first time. For people with cystic fibrosis, PIP tribunal data shows ruling in favour of the claimant is even higher than the general tribunals data for health-related assessment appeals. Respondents to a survey by the Cystic Fibrosis Trust said they weren’t given time to explain themselves in the assessment, they were not listened to, or were met with judgement and a lack of compassion. CF is a fluctuating condition, and the burden should be on the assessors to gather that overview, rather than making a judgement solely in the here and now. People with fluctuating conditions may be able to attend an assessment and perform a physical task when requested, but this may lead to days of subsequent fatigue and pain.[2]

Q7a. An overhaul of the process to rely on the factual paper-based evidence earlier would reduce strains on clinicians, assessors, charities and most importantly claimants by preventing many cases from going to appeal. Assessors’ comments about claimants’ “believe[ing] that there were things that they could not do” suggests a misunderstanding of PIP’s criteria (Baumberg Geiger, 2018, p36).[3]

High demand for support from charities

Q12. The Cystic Fibrosis Trust saw a huge demand for information and support services during the pandemic and has continued to provide welfare advice to people who faced many other challenges at that time due to being clinically extremely vulnerable to the covid-19 virus. In 2019/20, the Cystic Fibrosis Trust awarded 1,050 welfare grants totalling over £282,000 covering everything from travel costs, hospital admissions and replacement of household appliances, with an immediate negative impact on a person’s health. The Trust’s Welfare and Rights Advisor has just recently completed their 1000th PIP case with some support being provided to people with CF for their second or third PIP application.

The claims process is too onerous and, ideally, those with long-term conditions should not be required to undergo repeated reassessments when their condition is unlikely to change. People with cystic fibrosis have a shortened life expectancy and significant daily treatment burden. They already must attend countless medical appointments and manage a barrage of prescription medication, for which they must pay, all around attempting to live a ‘normal life’. A long and complex application form and process acts as a barrier to people accessing the support they need. Many people with CF require assistance for applying for PIP, re-applying for PIP and dealing with tribunals resulting from negative decisions. The Trust fears that there may be many more people struggling with the process who need help to access financial support. The provision of either specialist support or a simplification of the long and complex form is required.

Q12a. The Department of Work and Pensions should work alongside the voluntary sector, in their requests for evidence. The Cystic Fibrosis Trust deals with hundreds of PIP applications each year and provides essential advice to many people with cystic fibrosis to help them understand what is being asked of them and what evidence they are required to gather. Such sources of support and advocacy for the claimant should be identified at the outset of the process and continue to be engaged with on behalf of the client.

The Impact of assessment on claimants

Q13 Surveys of specialist cystic fibrosis team social workers, and responses by over 270 individuals with CF have highlighted the mental and emotional impacts of participation in the health assessments for benefits process. Of particular concern is the ordeal many people feel they are subjected to with repeated reassessments. In a progressive, disease, this additional pressure and demand on time can have negative health implications. Despite new treatments, many people with CF may be listed for lung transplant if they have a poor prognosis and are in respiratory failure. Being assessed for PIP when life is limited and precarious, is an unnecessary source of stress, and offers only harm to those in need of financial support.

Recommendations

  1. Remove or reduce unnecessary reassessments for people whose health is unlikely to improve: For those with a progressive, life-long condition whereby their health is highly unlikely to improve, the threat of constant reassessment is anxiety provoking, costly and unnecessary.
  2. Use paper evidence provided by specialist multidisciplinary teams rather than arbitrary assessments: Excellent evidence can be provided by a cystic fibrosis multidisciplinary team, which contains specialism from consultants, physios, dietitians, psychologists, social workers, and experts in CF related co-morbidities.
  3. End the reassessment for people on the transplant list: With poor quality of life and extremely limited life expectancy, people are not added to the transplant list unless it is a last resort. Reassessments are an unnecessary source of anxiety, which a person with such poor health can ill afford.
  4. Work together with the third sector: The Cystic Fibrosis Trust deals with hundreds of PIP applications each year and that support and advocacy is essential in many people with cystic fibrosis understanding what is being asked of them so should be identified from the outset by the DWP.

 

 

November 2021


[1] https://www.whatdotheyknow.com/request/pip_tribunal_data_2?nocache=incoming-1601142#incoming-1601142

[2] Baumberg Geiger, 2018, p39

[3] Ibid