24 June 2019

Universal Credit and Cancer (held jointly with the APPG on Cancer)

Universal Credit and Cancer (held jointly with the APPG on Cancer)


The APPG on Universal Credit (UC) is a cross-party group, which was established in order for Members of Parliament and Peers of all parties to be able to come together to discuss their experiences of UC and those of their constituents, to receive advice and support from various agencies, to share best practice at supporting claimants and monitor this critical policy as it is rolled out.

The APPG accepts the core aims of UC in simplifying the benefits system and making it easier for people to move into work. The reality of UC, however, does not live up to these good intentions. We are seriously concerned that the design of UC does not sufficiently take into consideration the specific needs of the poorest working age people in the UK, that it fails to provide many of households with sufficient income to get by and that in its current form, UC does not work in their best interest.

On 24 June 2019, the APPG held a joint session with the APPG on Cancer to discuss how best to support vulnerable claimants on UC, particularly those with cancer, hearing evidence from:  A Universal Credit claimant receiving treatment for cancer, the Minister of State for Disabled People, Health & Work and mental health charity Mind. James Bolton, Universal Credit Policy Deputy Director remained for the full session to answer questions.

The following parliamentarians were present: Ruth George MP (Chair of the APPG on Universal Credit & Vice-Chair of the APPG on Cancer), Nic Dakin (Chair of the APPG on Cancer), Debbie Abrahams MP (Vice-Chair), Karen Lee MP and Baroness Ruth Lister of Burtersett (Vice- Chair).


The secretariat for the APPG on Cancer, Macmillan Cancer Care will follow up the action points with the Minister’s office.

  • The Minister will investigate Sarah Mills and Macmillan’s cases, of where claimants with cancer have struggled to claim UC.
  • The Minister will send a reminder to the Jobcentre network that toilets should be accessible for people with health conditions.
  • The Minister will look at how the DWP can be more proactive in offering home visits.
  • James Bolton will look into the issue of the child element of UC being removed after the child has been in hospital for 6 months.
  • James Bolton to answer Nic Dakin’s question about what performance indicators the Permanent Secretary has implemented, to monitor on wait times for the UC helpline.

Overview from the Chair

The 26,000 people with cancer are currently in the Support Group of ir ESA will be moved over to UC either through natural or managed migration.

DWP statistics from October 2018 show that less than half (46%) of people with a long-term health condition were unable to complete their claim in one attempt. 

The National Audit Office’s report in January found 67% of people with health conditions or disabilities did not receive their first UC payment on time.



Sarah was diagnosed with Stage 3C Colorectal Cancer in February last year.  She had a 10cm tumour in her lower intestine which was caught just before it started to spread. Sarah had surgery in March to remove the tumour and then started 6 months of chemotherapy.

Prior to this, Sarah worked freelance and had a contract that ended just before she went into hospital – at which point she needed 6 months off for treatment and recovery. Sarah sent of a postal claim for Employment and Support Allowance (ESA) via recorded delivery the day she went into hospital. She found the claiming process to be an incredibly difficult process that consumed a lot of her energy, at the same time she was coming to terms with a life-threatening diagnosis. “I began the process of making a claim well in advance, but found the system so impossible to use that it took me right through to the morning of my surgery to get through it, which was when the application went in the post.” Her claim was delayed by 4 and a half months.

Sarah was then moved on to UC. In her evidence she recounted two particular issues she faced:

  1. Sarah’s surgery resulted in her having a colostomy bag which unfortunately split on her way to the Jobcentre for her UC appointment. She arrived on time but was told by the receptionist that she was not allowed to use the toilet, despite having faeces spilling down her leg. Sarah had to go and use the toilets at the local library instead. Upon her return the receptionist apologised and said that she was on following orders.

Sarah found this experience humiliating.

  • Towards the end of Sarah’s chemotherapy she was offered a 4 week contract at short notice to start at the end of the month. She immediately wrote to the DWP to inform them and pause her ESA claim but 3 months later she received a letter saying she was been fined £50, as the DWP has been informed by HMRC that she had worked for 4 weeks. She was given a civil penalty for not telling the DWP about this “straight away”.

Sarah had kept the delivery receipt for her initial letter to DWP informing them about her return to work and so responded with this proof but received another aggressive letter chasing the fine.  Sarah replied with a letter for a third time and this time received a reply direct from the debt collectors. This turned into a protracted and stressful process which Sarah eventually had to seek help from her mother to sort out, so she could focus her recovery and work.

Sarah has until this point had a perfect credit score and is concerned that this episode may have put that at risk. She also asked how she was supposed to challenge debt collectors once she had left the UC system due to finding longer term work, as she no longer has access to her journal.

Sarah believes that the system should not be both disorganised and punitive. The whole experience made her feel it would have been easier if she hadn’t gone back to work for those 4 weeks last year. It was only thanks to her mother’s help she was able to resolve the issue and she is concerned for more vulnerable claimants who are less able to fight errors.

Sarah explained that part of the reason she took time out of work was because she has a 25% chance of her cancer returning, so while she is still in active treatment, she wanted to give herself the best chance of survival by focusing on her recovery.  Having the added stress of dealing with problems with her claim did not help her recovery.


The Minister thanked Macmillan Cancer Care for raising its concerns and working with the DWP. He apologised for Sarah’s experience and stated that it was clear from what she set out that the system had gone wrong in her case.

The Minister will investigate Sarah’s experience at her Jobcentre and send a reminder to the Jobcentre network that toilets should be accessible for with people with health conditions. He similarly requested that Sarah share her case with his office so he can look into the issue of the £50 fine she received, so that he could determine whether this was an isolated issue or a wider problem. Macmillan Cancer Care will send Sarah Mills’ case to the Minister’s Office to be investigated.

The Minister was clear that what happened to Sarah “should not have happened”. He was not aware of other cases where a fine had been levied in error. He recognised that Sarah was lucky that she was able to speak up for herself and that many more vulnerable claimants who may not be able to. Sarah pointed out that the fact that he hadn’t heard other cases like hers did not mean that they didn’t exist. Sarah suspects there were plenty of people who are chronically ill or disabled and are having similar experiences on this benefit, but they do not feel confident or have the means to contest it. That when you have been ill for a long time you start to internalise failure and accept it as something that happens to you, so there are probably lots of claimants in the same boat who are just not arguing with the system.

Support for Claimants

The Minister agreed that Sarah was right to focus on her recovery and that the UC system provides great independence to be able to do this. The Minister has asked Citizens Advice to collate the work they are doing provide Universal Support and work out what ongoing support they could provide claimants, if they had unlimited funds to do so.

The Minister noted that some of the problems Sarah faced with her ESA claim are improved by UC which offers a single point of contact. The 1-year contract with Citizens Advice will also provide independent support for vulnerable claimants.

The Minister wants to look at the initial conversation claimants have with the DWP and Jobcentre to identify who can best support them. He referenced the PIP process which encourages claimants to bring someone with them to their PIP assessment to support them. A Macmillan support worker noted that they had never known a PIP assessment where the third-party present was encouraged to contribute.

Baroness Ruth Lister stated that she was concerned that issues around explicit consent was preventing advice organisations from supporting claimants. The Minister agreed that improvements could be made to this and that he was hoping to build this into the job coaches’ initial conversation with a claimant, to ask if they had any individuals, friends, family, or advice organisations that they would like the Jobcentre to notify about their UC claim.

Ayaz Manji from Mind noted that the work conditionality under UC poses safeguarding problems for claimants with mental health issues and that conditions need to be flagged on the UC system so the DWP and work coaches to be aware. The Minister highlighted the progress that had been made helping claimants with mental health conditions – under PIP you are 6 times more likely to get the higher rate if you have a mental health problem than under Disability Living Allowance. One of the benefits of UC is that the system allows flexibility for those claimants with fluctuating conditions – unlike legacy benefits, so claimants don’t fall out of the benefits system.

Sarah Mills noted that when you have been ill for a long time you feel less able to challenge errors and fines.


Karen Lee MP – ESA claimants with cancer are having to have another assessment when moving onto UC.

The Minister responded that if a claimant agrees the DWP can do a written assessment rather than asking the claimant to go through another full assessment. This hasn’t launched yet but will after stakeholder engagement.

Terminal Illness / DS1500s / Home Visits

Macmillan support worker – Under other benefits having a DS1500 means that a terminally ill person will not have to go to the Jobcentre, but this is not currently in place for UC. Many cancer patients are being told they have to come in to the Job Centre and won’t ask for a home visit instead as they don’t know they can or don’t feel able to. Also, the issue of Jobcentre’s disclosing to claimants that they had a DS1500 form when the claimant was unaware of the fact that they had a terminal diagnosis was also raised.

The Minister acknowledged that the DWP needed to be more proactive in offering home visits and was looking at this.


Karen Lee MP raised the issue of sanctions.

Justin Tomlinson MP stated that the DWP had been receptive to Work and Pensions Select Committee’s report on Sanctions and noted the DWP were carrying out improvements. He emphasised that sanctions should only be a last resort.

  • MIND

About Mind

Mind offers information and advice to people with mental health problems in England and Wales.

The distinction between mental and physical health can often be artificial and argued that people suffering from cancer tended to experience mental health issues as well. 10 years after diagnosis, half of people with cancer are struggling with mental health problems.

Mind’s position is that people aren’t ‘vulnerable’ they are made vulnerable by the context they are in. As a general principle that the less flexible, and the less choices you are offered, the more vulnerable you can be made by a system.

There are a number of elements of UC that Mind has found are particularly problematic for people with mental health problems:

  • The 5 week wait
  • Explicit consent
  • A built in assumption that claimants will attend Jobcentre
  • This often includes one appointment to verify identity, an additional appointment to agree a claimant commitment and potentially a series of appointments to review work search activity while someone is waiting for an assessment.
  • These pose a huge strain when a claimant is unwell. One-person Mind helped was so worried about attending their appointment that they struggled to eat, had panic attacks, and stated to consider suicide again. This person still made it in.
  • Conditionality
  • There is a level of risk that individual work coaches are understanding of an individual’s condition.


  1. The DWP should remove requirements for unnecessary appointments when people are unwell. It would be straight-forward to remove conditionality requirements for people who are unwell and who have not yet had a Work Capability Assessment.
  2. Home visits need to be presented as an entitlement not just something that some people can get.


Following the Minister’s departure, James Bolton stayed to respond to further questions.

The following concerns and recommendations were raised and made.

  • Disabled people have not benefitted from the move from legacy benefits to UC. A support worker from Macmillan noted that the people she supports are in some cases £100 per week worse off.

James Bolton cited the Managed Migration regulations legislation that are due to be put before Parliament that would ensure that people in receipt of Severe Disability Premium who have lost money due to the move onto UC will be compensated. Macmillan Cancer Care noted that this will not be in place for new claimants. James Bolton stated this was part of the motivation for reviewing the Support Group shortly.


Asked what performance indicators the DWP had put in place to measure the wait times for UC helpline. James Bolton stated that the Permanent Secretary had implemented measures to monitor the wait times.

  • Many patients don’t have the strength to wait to get through the Universal Credit phoneline.
  • There is little awareness of DS1500s and the process for terminally ill patients.
  • Letters about Universal Credit over payments are being automatically generated when Carers Allowance applications are processed and backdated.
  • UC is not as supportive for carers of children who have long hospital stays – child element is removed after the child has been in hospital for 6 months. James Bolton was appreciative of this being raised as it was not an issue they have heard about before.
  • Sometimes work coaches can be very slow to respond to work journal enquiries. There should be ways for advice organisations to escalate questions to case managers.


Announcement by the Secretary of State for Work and Pensions on 11.07.19

Macmillan Cancer Care helpline: 0808 808 00 00