Person-centred care during the pandemic

Care planning

Effective care planning is vital for patient wellbeing, and patients must be as fully involved in their care planning as possible. As well as remaining a key focus of our monitoring, the importance of shared decision making is emphasised in the MHA Code of Practice and in guidance from the National Institute for Health and Care Excellence (NICE).

Published in June 2021, NICE guideline NG197 ‘Shared Decision Making Between Patients and Clinicians’ stresses a values-based approach where clinicians discuss risks, benefits and consequences of care with the patient, in the context of that person’s life and what matters to them. The guidance further suggests that services should appoint a senior leader to work with service user champions to raise the profile of the voice of people who use services, and help shared decision-making to be embedded in their organisations.

While people with severe mental disorders may not always have capacity to fully engage in shared decision-making, it is important that they are not labelled as ‘lacking capacity’ overall and, as a result, excluded from shared decision-making. Mental capacity is a decision-specific concept, meaning that it can differ on a decision by decision basis, and NICE guideline NG108 ‘Decision making and mental capacity’, published in October 2018, echoes generally accepted good practice in expecting services to support the people using them to build capacity to make decisions.

Explaining legal rights

Providing people with clear and accurate information on their legal position and rights is essential, and provides the foundation for shared decision-making and person-centred care. This includes making sure that people are aware that their hospital has a duty to give them information about their legal position and rights.

The importance of providing patients with clear and accurate information on their legal position and rights cannot be overstated and should be the foundation on which any wider shared decision-making and person-centred care is delivered.

This was illustrated by a June 2021 Court of Protection hearing, University Hospitals Dorset NHS Foundation Trust and Anor v Miss K, which related to a proposed caesarean delivery of a baby carried by a mother detained under section 2 of the MHA.

In this case, there was a lack of information sharing across clinical teams. As a result, the obstetrician responsible for gaining consent for a caesarean delivery was unaware of the degree of the patient’s mental disorder, or that it had already been decided that the baby would be removed from her care immediately at birth. This meant that when the obstetrician obtained the patient’s ‘consent’, the patient wasn’t given the right information about plans for the baby or her role in its future. The patient’s ‘consent’ was, at this point, possibly invalid due to incapacity, but was also invalid because she was misled by the comments made by the obstetrician about how she should surely want to have (and keep) a healthy child. It was only because the patient’s condition deteriorated that the procedure did not go ahead and the case was taken to the Court of Protection.

We expect services to have procedures in place to inform patients of their legal position and rights under the MHA, and to record that they have both given the person this information and whether it is thought they understood it. People using mental health services are often particularly unwell when being admitted to hospital, so services need to strike a balance between ensuring that people are aware of and understand their rights, especially the right of appeal, while avoiding causing distress through overly repetitious ‘reading of rights’.

On the following remote review, we were concerned our patient interviews showed that nearly half of patients did not fully understand their rights. We were particularly concerned that although information about their rights was given on admission, it was not repeated in time to make an appeal about their detention to the Mental Health Tribunal.

Services also need to make sure that they take a person-centred approach to when and how often they attempt to inform patients of their legal position and rights under the MHA.

At one service we inspected, it was the organisation’s policy that people using the service were read their rights on a monthly basis. This did not take account of the fact that on the ward we visited three out of five of the people using the service had severe cognitive impairments and significant communication needs. In addition, it was not clear from the records that the information given was individualised to people’s needs. We saw several completed section 132 rights records for these patients, which showed no increase in understanding over time. In one case, a relative had questioned this routine monthly approach, observing that their relative had no understanding of the rights being read at a care programme approach meeting. In response, according to the record, the head of care stated in response that this was a legal requirement and inaccurately, that all people using the service had their legal rights read on a monthly basis. As a result of our inspection, the hospital was required to change its approach.

Where patients are informally admitted to hospital on a voluntary basis, it is important to ensure that they are given the right information, in a way that they can understand, so they can make an informed decision. On one NHS ward we visited, an informal patient had not been given adequate information, and therefore had not fully understood the terms of their admission to the ward. In response to our concerns, the ward manager raised this matter with the home treatment team making the referral, and also audited use of holding powers.

Involving patients in care planning

In previous reports we have highlighted our concerns over the quality of care plans and the lack of involvement of patients in the care planning process.

While we have found some examples of good practice, we continue to find examples of poor patient involvement. For example, in one acute admission ward for men we visited, we found no evidence that patients were involved in devising their care plans:

In response to our challenge over how the service would better involve patients in their care, the ward improved the supervision of qualified staff and carried out an in-depth review of intervention plans. In addition, the service introduced a masterclass for all ward-based staff to look how planning would be completed in a collaborative manner with patients and, where this isn’t clinically possible, that there is a clear rationale documented in the intervention plan.

Where we have raised concerns previously, many services have made improvements in response. For example, on a visit to a female ward in June 2019 we raised several actions relating to care planning and patient involvement. On our remote review of the service in November 2020 we heard about significant improvements from patients and staff.

Where people are involved in their care planning, they often report a more positive experience, feeling more in control, and having better relationships with staff.

Through our monitoring activity, we heard about a new approach that Birmingham and Solihull Mental Health NHS Foundation Trust is piloting for care planning arrangements. Every week a named nurse has a one-to-one with the patient and creates a document describing the patient’s views and wishes, and the ward staff’s assessment of the week, including any incidents, activities, leave, and social interactions. The multidisciplinary team (MDT) then discusses this document with the patient, summarises the discussion and generates a ‘recovery and discharge’ actions form. This states what needs to be done, who needs to do it and when it needs to be achieved by. They print the review and actions and give them to the patient. This process is repeated weekly, which should ensure that care plans never go out of date and decisions are made in partnership with the patient.

We welcome the government’s proposal to introduce a statutory care and treatment plan as part of the MHA reforms. This should provide an opportunity to require services to show evidence of co-production with the patient. Where patients are too unwell to participate, there should be proper evidence rather than generic statements, like ‘patient too unwell’, ‘patient declined’.

Given that the proposed principles for the Act emphasize the importance of patient autonomy, any decisions to override a patient’s current or past wishes also need to be recorded prominently with accompanying rationale. In addition, we have suggested that a statutory care plan should include headings requiring information on communication needs; the views of relatives or carers (or, as proposed, the nominated person); and plans to introduce an advocate to the patient. These issues are particularly important for people in the early weeks of detention when they may have difficulty articulating their own views and wishes.

Advocacy

Access to advocacy services has been variable during the pandemic. While digital technology allowed patients to continue to access advocacy services remotely, many advocates told us that not being able to visit wards limited their activity.

We encouraged the use of video calls across a number of services, particularly where uptake of advocacy services had fallen. However, we recognise the limitations of remote services including, for example, access to digital devices on wards and some patients not feeling comfortable in taking part in video calls.

As a result, we urged services to restart physical visits as soon as it was safe to do so. For example, on one remote review at a rehabilitation unit in October 2020, we were told by the Independent Mental Health Advocate (IMHA) that the advocacy provider would not allow her to make visits in person, although she was not shielding and the unit was allowing visits. We asked the ward manager to challenge this with the advocacy provider and it was agreed that the IMHA could restart her visits.

During the pandemic, some advocacy services changed their referral procedures to only accept referrals through a web-based form. In some cases, we heard that this could lead to reduced take-up. Advocacy services should aim for systems where patients can seek help through any means of communication, to ensure that their services are fully accessible, as in the following example.

We support the government proposals to strengthen the advocacy role, improve training, encourage culturally appropriate advocacy and, provided that this is not at the expense of smaller providers, look at accreditation for advocates.

In our response to the white paper consultation, we also suggested that current commissioning arrangements for advocacy services limit their effectiveness.

For many services there are different advocates for Mental Capacity Act and MHA advocacy, and in some cases a third, generic advocacy service. This can lead to confusion.

The legal duty to commission IMHA services rests with the local authority where a hospital is based. We have previously highlighted that not all local authorities meet this duty, and this continues to be the case. In practice, some IMHA services are commissioned according to where the patient is normally resident. In some London services, we find that many wards have patients from a range of boroughs, all of which have commissioned different IMHA services.

As a result of commissioning deficits, some national services and independent hospitals that take patients from many different areas have resorted to commissioning their own IMHA service. This is often the only practical solution and, although there is a theoretical risk to the independence of the advocacy service, we have not yet encountered any serious problems.

Local authorities have many strains on their budget and must make difficult funding decisions. We are concerned that many local authorities are unable or unwilling to commission IMHA services that are sufficiently resourced to meet the needs of the area they serve, especially in terms of funding visits to wards and engagement with patients without specific instruction. As a result, we find that patients can have very different experiences of an IMHA service, depending on where they are detained in England. Commissioning an advocacy service should not be just about funding sessions when a patient ‘instructs’ an advocate. As highlighted in last year’s annual report, the pandemic has highlighted how important ward visits, ‘drop-in’ sessions or surgeries and ward meetings are in supporting patients to use advocacy services.

As part of the MHA reforms, we have suggested that centrally-funded IMHA services should be considered. As part of this, services should be coordinated across integrated care systems to ensure that funds are distributed fairly in accordance with need.

Blanket restrictions

In our monitoring visits and remote reviews we have sought to encourage services to challenge outdated, institutionalised and overly restrictive practices in favour of patient choice and a human-rights based approach. The MHA Code of Practice is clear that blanket restrictions – defined as rules or policies applicable to groups of patients irrespective of individual risk assessment – should be avoided, unless they can be justified as necessary and proportionate.

We believe that our emphasis on this has had a profound impact on many services. As a result of our activities, many services have made changes and put in place processes to monitor and review restrictions, to ensure that these are justifiable and, wherever possible, applied according to individualised patient risk assessments.

We continue to have positive engagement with services over maintaining least restrictive practice, even in services with necessarily higher levels of physical security.

During the pandemic, when opportunities for off-site leave were reduced, many services relaxed their implementation of smoke-free policies. In our last report, we stated that we expect services to make renewed efforts to encourage people to stop smoking to reverse these temporary backwards steps. Through our monitoring activity, we heard examples of the steps that some services have taken to address this, including allowing patients to smoke e-cigarettes in their own rooms.

We do not view the smoke-free policy as an unjustified blanket restriction, although, particularly in the early stage of implementation, we raised concerns where it was introduced primarily in terms of privation (patients being told that they could not smoke cigarettes on site after a certain date) that was not balanced with opportunity (patients being offered positive support and alternatives to cigarettes).

We expect services to continue to encourage people who use services to stop smoking as part of their efforts to support people to adopt healthier lifestyles (see section on food and nutrition).

Access to digital technology

In previous reports, we have raised our concerns about blanket restrictions around the use of mobile phones on wards. Last year, we highlighted that many services had relaxed their rules around the use of mobile phones and access to the internet because social distancing restrictions were preventing people from having visitors. We supported this approach and set out our expectations that services should maintain this access after the pandemic, unless there were clear reasons why this should not happen.

In general, services seem to be maintaining access to mobile phones. For example, at one service, we heard that patients who were previously restricted as to when and how they could use their phones, were now able to use their phones on the wards in line with individual risk assessments. The service had also created an IT room in one of the spare rooms.

In some cases, the use of ward-based equipment for video calls is limited by staff availability, and may be poor substitute for individual devices.

We have found that most concerns around allowing access to digital devices, such as misuse of cameras and use of social media breaching other patients’ confidentiality, can be managed without a total ban on phones. However, we recognise that there are still some risks in allowing access to digital devices. For example, over the summer of 2020 we were told that some patients on a rehabilitation ward in a medium secure unit had been using synthetic cannabinoids (Spice, or K2) on the ward. The ward had identified that the drugs may have been ordered via the ward laptop and posted to the ward. When we carried out a remote review in October 2020, we heard that they had managed to reduce the problem through increased vigilance from staff and limitations on access to the laptop.

We recognise that allowing some but not all patients to have access to a mobile phone could lead to patients with access being bullied or exploited, for example to obtain drugs. As a result, this needs to be taken into account when making decisions about access.

At another medium secure unit, we initially challenged limitations on access to mobile phones after 8pm, but accepted the rationale provided by the hospital. We heard that there had been some safeguarding issues relating to personal relationships, as well as some evidence of cyber-bullying and intimidating behaviour. We heard that the situation was kept under review, and that people were supported to learn about safe use of social media and safe, healthy relationships. The ward continued to provide access to smart phones during the day and patients could also to keep in touch with family using video calling apps on the hospital’s equipment. At the time of our remote review, one patient had recently watched her grandmother’s funeral service on the television.

However, services need to ensure that all decisions are made according to individual risk, and are not blanket rules. Services should also provide patients and staff with clear explanations of the ways in which access to communications can be legitimately restricted in relation to individual risk. We will continue to challenge decisions that we feel do not meet the principle of least restriction.

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