Written evidence from Carers UK (HAB0156)
Dear Stephen
Many thanks for your letter of 20 May. It was a pleasure to attend the Committee and have the opportunity to convey the lived experience of carers when undergoing medical assessments.
I was fortunate enough to receive many accounts from carers regarding their experiences, and as you heard, these were very mixed. There were some interesting trends that may have bearing on the Committee’s plans.
- In cases of reviews for existing benefits recipients, carers of people with chronic or progressive conditions generally found virtual assessments to be sufficient to fulfil the needs of the assessor. As long as the assessor had adequate knowledge of the impairment being discussed, these assessments were more likely to be brief and confirming factual information already held about conditions that would not improve.
- Digitally-excluded carers and older carers are more likely to prefer face-to-face assessments.
- For new benefits applicants or reviews due to changes in health status, it was acknowledged by some carers that complex medical matters, such as the interaction between comorbid health conditions, and less-understood syndromes are challenging to convey, whatever the medium. The critical success factors in these cases include effective advocacy by carers and supportive medical evidence from GPs, specialists and allied health professionals to explain both the medical facts and the impact on day-to-day function. Due to the complexity of information, face-to-face assessments may be preferable.
- In cases where functional impairment is due to factors other than physical health, for example the impact of Autism, it can be challenging to convey the functional impairment without observation. One carer described insisting on a home visit so that his daughter could be observed interacting with her surroundings and assessing risk. This led to the assessor observing her withdrawing from the conversation altogether, being unable to process the questions about her function, or even tolerate the assessor’s presence. This gave a far better insight to the impact of her Autism than a telephone call.
- The experience of carers who apply on behalf of their cared-for people is of not always having their status and insight recognised. It would be most beneficial if the carer’s right to input could be clarified and impressed upon those undertaking assessments. The example I shared of a carer becoming power of attorney specifically for the purpose of the benefits application is both laborious and potentially disempowering for the cared-for person.
- Finally, several carers described in painfully clear terms the impact that assessments have on those who undergo them, often seeing their role as protecting the cared-for person from the experience. One carer, Elaine, stated “I worry about what will happen to my child when I die as who will safeguard them from these encounters with DWP medical assessments”.
On a different but related issue of whether virtual or face-to-face assessments are better or worse for carers, in our State of Caring 2021 survey of over 8,000 carers, we asked them whether digital had made things worse, better or no change in their experience. 48% of unpaid carers had not used some kind of video consultation i.e. Teams, Zoom, Whatsapp for health and care services. Out of those who had, one quarter said it made caring harder, 30% said no change and 43% said it made caring easier. We did not ask this question in terms of benefits assessments, but it’s clear that an informed choice must be made as we set out here, in order to ensure that the right decisions are being made, using the most appropriate form of communication.
Carers UK’s recommendations on the specific topic of virtual assessments is:
- That a choice of virtual and in-person assessments is offered whenever possible, perhaps with the applicant’s preference being stated and taken into consideration alongside the conditions, impairments and suitable methods of functional assessment.
- That chronic and progressive impairments should not require face-to-face re-assessments unless there had been a deterioration of function that may result in a higher award.
- That the status of carers as having valuable insight into medical and functional matters is respected, particularly where the applicant may lack capacity to fully engage.
- That the dignity of all concerned with the application is respected and support made available if required.
I do hope that this information adds to the body of evidence being considered by the Committee, and I would be happy to clarify if you have any further questions. I very much look forward to the findings and recommendations of the Committee later in the year.
Yours sincerely
Aaron Dryden
Director of Carer Support
June 2022