By Kate Mercer
Independent advocacy is still available for people who are using health and care services and want support in either making choices, speaking up or raising concerns about things that are (or are not) happening.
Within the current crisis, which is forcing local authorities to reprioritise services, trigger ‘easements’ of duties or reduce the type of support that can be safely arranged, the need for people to access an independent advocate is now more important than ever.
Advocacy is a legal right
None of the Care Act easements introduced within the Coronavirus Act reduced or removed the right to an advocate and everyone who was entitled to receive advocacy before Covid-19 is still entitled to access this same support. In fact, more people are likely to be eligible for independent advocacy as access to natural networks of allies and supporters are restricted during lockdown.
Hospital managers and every decision maker in health and care must consider if advocacy should be triggered whenever they support a person through any decision.
For people who face difficulty or lack capacity in making decisions – or find themselves in a particularly vulnerable position, including people detained under the Mental Health Act or young people in care – then advocacy is likely to be an entitlement. Not referring when a person should be offered advocacy can lead to serious consequences, such as in R(SG) v London Borough of Haringey where the judge found the absence of advocacy made the person’s assessment invalid and ordered it to be redone.
No reduction in entitlements during pandemic
The Department of Health and Social Care has confirmed that independent advocates are classed as key workers and, as such, advocacy services are still operating in all of the usual settings where people receive support from health and care services. Along with so many other frontline workers, advocates are thinking creatively about how to provide effective remote support as they observe social distancing. Use is increasingly being made of online platforms including Zoom, Microsoft Teams, Skype and Whatsapp to connect with people electronically.
Many mental health hospitals have been incredibly supportive in converting office space into special communication hubs with conferencing facilities for patients – ensuring people have regular contact with family, friends and advocates. Independent mental health advocates (IMHAs) are holding regular scheduled online drop-in sessions, as well as offering virtual 1:1 appointments, to ensure people are informed of their rights, and supported to ask important questions about their treatment and express what is most important to them.
Within care home settings, independent mental capacity advocates (IMCAs) are holding regular telephone sessions to find out how people are getting on during the crisis. This has led to advocates supporting many people to raise concerns about incorrect mental capacity assessments and challenge decisions.
Earlier in the month, one lady, assessed as lacking capacity to make the decision, had been moved into a home she didn’t want to live in. She desperately wanted to live independently in her own home. The advocate was concerned that the original assessment did not fully involve her carers who knew her well, and so did not uphold principle 2 of the Mental Capacity Act, which requires ‘all practicable steps’ to be taken to support the person to make the decision.
The advocate requested the assessment was redone and involved the carers. The reassessment found that she did have capacity to make the decision, which enabled her to do so and regain her liberty. The advocate’s work was instrumental in ensuring that this person’s rights were protected, and her voice was heard, a critically important intervention in testing times.
Advocates will still meet face to face – when it’s safe
Not all people using advocacy will be able to cope with remote meetings. We are seeing this particularly with people who have a learning disability, dementia or sensory impairments. Some people find video conferencing or online platforms quite scary, don’t understand how they work or simply cannot use them.
Advocates are still able to offer advocacy support and will offer face-to-face meetings where these are needed. One example is an IMHA who arranged to walk with a patient around the hospital grounds so they could talk in a private space whilst observing social distancing.
Another advocate who was very concerned at not being able to meet face to face with a person where safeguarding was involved, arranged to meet them at the local GP surgery where they could both sanitise and use personal protective equipment (PPE). This meeting allowed the advocate to talk to the lady about concerns that she wasn’t safe and support her to make decisions about relationships. The advocate felt this would have been impossible to do over the phone.
Protecting human rights
Within the current crisis, there are huge concerns from people, and their families, that they will face cuts to their packages of care as well as suffer unequal access to health services. We have already witnessed astonishingly unlawful and discriminatory approaches, such as blanket do not attempt cardiopulmonary resuscitation (DNACPR) orders being applied to people ‘because they live in a care home’ or ‘because the person has dementia and co-morbidities’, or decisions being made without the individuals’ knowledge. Advocates have been heavily involved in ensuring such decisions do not breach human rights and involve the person.
Advocates are also witnessing increasing occurrences where overzealous application of lockdown means people are becoming incredibly anxious and distressed. One advocate supported a lady to challenge a blanket ban which prevented all residents from leaving the care home. The lady has a learning disability and autism and copes in her day-to-day life through rituals which, pre-Covid, included going out to a café in the car at a specific time of day and using a specific route. This was so significant that it had been a condition on the Deprivation of Liberty Safeguards authorisation.
Care staff had creatively encouraged her to use the garden in the care home as the drives had stopped – but she didn’t want to do this and was becoming increasingly upset. The advocate asked the home about restrictions and explained that regulations allowed people to leave the home if they had a reasonable justification, which includes the need to avoid mental distress and protect wellbeing (especially where this is identified within the person’s care plan).
Given that she was symptom free, the risks of catching or transmitting Covid-19 would not significantly increase by going for a drive, whereas risk to her wellbeing at not being able to go out would likely have a detrimental impact on her mental health and behaviour.
Advocates have also witnessed incorrect information being shared. This included one area where a number of social workers were informing people they ‘weren’t entitled to an assessment because of the Covid 19 crisis’. When the advocate investigated further, they discovered the local authority had not implemented the Care Act easements, so they were able to return to the social worker and confirm that full compliance with the Care Act duties was still in fact necessary.
Other advocates have quickly corrected misinformation that care home residents ‘can’t go out’ or that people detained in mental health wards ‘cannot have section 17 leave’. In both of these examples, providers were applying blanket bans which failed to consider the impact on the individual or any alternatives that may have lessened restrictions on their rights.
Advocacy also led an IMHA being able to support a patient raise concerns that the care they were receiving was falling below standards and could be breaching their human rights. The patient had tested positive for Covid-19 and, as the staff didn’t have PPE, the response of the mental health hospital was to isolate the person in their room.
As their single room did not have ensuite facilities, a bed pan was being used for all toileting. This often meant that food was being passed into the room a short distance away from a full bed pan. The advocate raised concerns that this was unsanitary and undignified and asked if the person could access a toilet or an ensuite room. After this was rejected, the advocate suggested the toilet opposite the bedroom was isolated for their personal use only and disinfected daily. This was eventually agreed, much to the relief and comfort of the person.
Make advocacy accessible
Advocacy works well in places where there are strong links between the health, care (especially safeguarding) teams and the advocacy service. People who need advocacy often rely on professionals to make the referral on their behalf or, at the very least, explain their entitlement to advocacy support.
Advocates make a very real difference in the lives of people who want or need an independent person to help them make choices and express their views. They also provide important representation on behalf of people who lack capacity as decisions are made about their lives.
During the current health emergency, where increased pressure on the NHS and local authorities will inevitably lead to problems in accessing support, independent advocates are here to ensure the views, experiences and human rights of people are respected, not forgotten.
Details have been changed and some stories have been amalgamated to protect confidentiality.
Kate Mercer is an advocacy trainer. She gives thanks to the following organisations for sharing advocacy stories and practice for this article:
- Advocacy Focus
- Advocacy for All
- Cloverleaf Advocacy
- Connected Voice
- People First Independent Advocacy
- Blackpool Empowerment