Care providers need clearer guidance about the Covid-19 vaccine so they can reassure the people they support, family members and staff, and ensure Mental Capacity Act (MCA) compliance, as the rollout begins, sector leaders have warned.
There are concerns that a lack of “clear user-friendly information” about the vaccine, including easy-read documents for people with learning disabilities, means it will be a challenge for care home residents and others receiving services to give informed consent to receive the vaccine, and for best interests decisions to be made in cases where a person lacks capacity to consent.
At the same time, a snapshot survey has found that 41% of just over 300 staff polled said they would not currently take the vaccine, including because of a lack of information about side-effects and the duration of immunity.
The Pfizer-BioNTech vaccine is being rolled out from today, initially in up to 50 “hospital hubs” across England. Though government advisory body the Joint Committee on Vaccination and Immunisation (JCVI) said last Wednesday that older adult care home residents were the highest priority for vaccination, they will not be first in line because of the challenges of delivering the vaccine to care homes. The vaccine needs to be transported and stored at -60C to -90C until it is ready to be administered, when it can be thawed and kept at fridge temperature for five days.
As a result, care home workers and those over 80 who can get to the hospital hubs will be first in line, though regulator the Medicines and Healthcare products Regulatory Authority (MHRA) has said that the vaccine should be deployable in care homes within a fortnight.
Other frontline health and social care workers, including those working in domiciliary care, are also high priority, according to the JCVI, and the the vaccine should subsequently be rolled out to those aged 75 and over and then to those aged 70 and over and those deemed to be clinically extremely vulnerable, groups that will include many other social care service users.
Need to counter misinformation
Sophie Chester-Glyn, managing director of learning disability and mental health provider Manor Community and director of CoProduce Care CIC, an online hub to help those working in and using social care share knowledge and influence change, said providers needed specific timelines about the vaccine rollout along with basic information that people are asking for. This included what was in the vaccine, how long it lasted, side effects and whether it interacted with other medications.
Public Health England has produced vaccine information for different groups – including older adults and social care staff – setting out its impact on reducing risk of disease, current uncertainty over whether it stops transmission of the coronavirus, side-effects and the vaccination process.
However, Chester-Glyn said: “The problem is that up against well-publicised misinformation, the current government information does not adequately address concerns and detailed, accessible information to counter this, so some at risk groups might decide there is not enough information for them to consent.”
Liz Jones, policy director of the National Care Forum (NCF), which represents voluntary sector providers, joined the call for more information and reassurance about the vaccine.
“We need clear information and advice from the MHRA and the Department of Health and Social Care to help us explain how important the vaccine is, how robust the approval mechanism is, what the minor side effects are and how it will help to keep them safe and the wider community in the care home – and that the risk of Covid-19 will remain very high to them – and others – if they choose not to have it,” Jones said.
Low vaccine confidence among care workers
A perceived lack of information about the vaccine has also affected confidence among social care workers, according to a survey released today by CoProduce Care CIC.
The survey, completed by 319 people, with 99% confirming they are currently working in the social care sector, found 41% of respondents would not currently take a Covid-19 vaccine. The majority of responses were received between 16-18 November, with 43% of respondents being care managers, 40% frontline staff and 13% owners or directors of care services.
The information that staff most clearly asked for, in order to feel more confident about taking a Covid-19 vaccine, was what is known about any possible side-effects, with one in three respondents citing this directly. Respondents were also particularly interested in how long the vaccine would be effective for and the health and efficacy outcomes for people with existing health conditions, comorbidities, or diverse demographic backgrounds.
The report said the survey revealed “genuine concerns which we recommend could be effectively addressed through targeted, transparent and purposeful information which is based not just on scientific but also the practical concerns raised”.
It added: “We need to ensure that people working in social care can access the vaccine in a way that will not be seen as so much of a burden to fit into a high-pressured work schedule and possible lack of transport. It is also important for people not to feel that they are being coerced or forced to take the vaccine without informed consent.”
Nadra Ahmed, chair of provider umbrella body the National Care Association, said she suspected the reasons behind low confidence were to do with the haste of production and the lack of clarity around side-effects and length of cover that the vaccine covers
Difficulty complying with MCA
Chester-Glyn, who is studying for a PhD in health and social care law, also raised specific concerns about cases in which people may lack capacity to consent to receive the vaccine.
She said communications from local public health teams were asking providers to consider people’s capacity without being able to provide service users with the “relevant information” they would need to understand, retain and weigh to make the decision to consent. She said this ran counter to the second Mental Capacity Act 2005 principle that people should not be treated as lacking capacity unless they have been given all practicable support to make the relevant decision for themselves.
Chester-Glyn also raised concerns about people using social care being treated as a group rather than in a person-centred way.
“GPs have been telling care workers to ‘get consent’ rather than prepare for informed consent [and] some family members have been dismissive and instructed care providers to ‘just make them take it’,” she said. “It would make sense to better educate families and professionals about their responsibilities in terms of capacity in line with this complex issue.”
She also questioned a form provided for relatives to say whether vaccination would be in a person’s best interests where they lacked capacity to consent, saying it gave the impression that the relative was the decision maker, rather than simply being consulted as part of the best interests process.
“The worry is that care homes may again get caught up in the crossfire if vaccines are administered against the stated wishes of families or families do not agree in their relative taking the vaccine,” she added.
Chester-Glyn said that providers faced significant pressures assessing capacity and making best interests decisions around vaccination to tight timescales, at a time of wider winter pressures, adding that it would be worth deploying independent mental capacity advocates to support the process.
MCA vaccination guidance
Last week, 39 Essex Chambers issued a rapid response guidance note on vaccination and mental capacity, which also warned against taking a blanket approach and stressed the need for professionals to be given time to carry out capacity assessments and best interests decisions before vaccines are adminstered.
It states that:
- If a person lacks capacity to consent to vaccination, and if they have a health and welfare attorney, the attorney/deputy is able to make the decision on the person’s behalf. But if the attorney/deputy refuses the vaccine for the person “there will be a serious question mark as to whether they are acting – as they are required to – in the best interests of the person”.
- Where there is no attorney or deputy and the person is assessed as lacking capacity, the decision will need to be taken by the professionals involved in the person’s care or treatment. In most cases, the professionals will need to draw up a plan for what should be done in the person’s best interests involving all those with an interest in that person’s welfare.
- Well before the actual date for the potential administration of the vaccine, it will be necessary for those involved to start collating the information required to enable a best interests determination to be made, which will mean consulting with family members (and, where relevant, friends) as those best able to give input as to the person’s wishes, feelings, beliefs and values.
- There cannot be a blanket decision that vaccination is in the best interests of a group of residents or patients, as this would be contrary to the requirement of the MCA 2005 that it is the best interests of that particular person at that particular time which are determinative.
- However, it is likely that vaccination would be in the person’s best interests either because it would be possible to say they would have consented had they had the capacity to do so, and, even if it is clear that the person would not wish to receive it, it would be legitimate to consider other factors that may result in the person’s wishes being overridden (though some of these factors, such as whether the vaccine reduces risk of onward transmission, are not currently relevant).
- The one caveat to this would be the case where the process of administering the vaccine would cause the person serious distress or harm (for example, if they would not tolerate a needle), in which case the chambers advises seeking legal advice on whether an application should be made to the Court of Protection to decide whether taking the vaccine is in the person’s best interests.
An Association of Directors of Adult Services (ADASS) spokesperson also stressed the significant workloads providers faced in supporting the vaccination programme alongside other pressures.
“We must recognise that social care providers have a great deal to do to cope with ensuring safe care, minimising staff movement, increased testing, managing outbreaks, and organising visiting,” the spokesperson said. “[With] 1.6m people working in social care supporting millions of people, the logistics of doing this is extremely challenging.”