Allies not adversaries: how the NHS can better engage with advocates
5th Feb 2019
In this article, Bevan Advocate Sylvia Targett explains how medical professionals can proactively work with third sector organisations and advocates as partners to benefit patients.
The role of the advocate in our community must not be underestimated. Unfortunately, my experience has taught me that this happens far too often – advocates are seen as agitators and can be easily “shot down,” constantly in the line of fire.
We become involved in case after case after communication has broken down between individuals, families and NHS or social services. Our jobs ideally should not exist, but for those we support, we are a lifeline for support and information.
Giving people a voice
For the past three years I have worked as an independent advocate (with no formal affiliation to the NHS or social services), and in this role I have helped 749 people. A large percentage of this work involved attending meetings on behalf of or alongside patients: multi-disciplinary meetings, discharge meetings, continuing healthcare meetings, NHS complaints and on-ward meetings.
We all know how frustrating it can be when people do not listen to us. Unfortunately, having an illness or a mental health problem can sometimes mean that it’s even harder to voice your opinion and for your wishes to be taken seriously by others. This can be a very difficult time for families and individuals, who have to deal with health and social care professionals who they are unable to communicate with effectively.
People who are ill and in hospital are often scared and so are their families. Families find that they are not appropriately involved in decisions being made about their own care or that of a loved one. This can result in unsafe discharge and total distress for the individuals and their families.
Competing demands for families
I recently picked up four cases involving people in care homes. Their families had contacted me to say that their relative has been discharged without proper planning, but more importantly without being allocated an advocate. When I called the hospital to find out why these individuals had not been allocated an advocate, I was told: “They don’t need one – they have family”.
With all due respect to the families of those who are ill or in care homes, they are often far too busy worrying about their relative and the practical demands of their illness - finances, property, day-to-day care - to be able to navigate and challenge the confusing health and social care system.
On a frequent basis I am told that a visit from a healthcare professional was fleeting and uninformative: “Someone came to see me - talked at me and then walked off.” Often we never find out who that person was nor do we have any useful record of their involvement.
Looking out for their best interests
A period of illness is a stressful time for patients as well as for their families. The best-laid plans can go awry, judgment is impaired, and, put simply: you are not at your best when you are sick. Patients need someone who can look out for their best interests and who can cut through red tape: clarifying options for hospitals and doctors, obtaining information or asking specific questions. This support can result in faster discharge with all parties being made aware of what’s going on and what their next steps are.
Very often the advocate is the last to hear about meetings regarding a patient (or not at all) and this means that there is more work to disentangle the mess and stress that has been created. We have been called a nuisance by health and care professionals and I have heard other negative statements including: “Things would have been much simpler if you weren’t here”, “Don’t phone an advocate – they are evil”.
We are not here to win popularity contests and we are saddened if health and care professionals feel this way. Our job is simply to cut through the red tape and explain to the individual/patient the latest progress in their case and what their options are. We do have the right to question decisions as our job is to support the individual or patient. We do not give our ‘personal opinion’ – we purely offer impartial guidance for patients and families during a period of confusion and stress. If you think about it: life would be so much more efficient if we could remove this stress from the hospital experience and patient’s care pathway.
Here to help, not hinder
I have found that after three years of working as an advocate that many in the medical profession do not really understand the role of the advocate and the legal obligations that are inherent to this role. Myself and fellow patient advocates have struggled on a daily basis to obtain any information (even with the patient’s consent) and to be meaningfully involved so that we could help our clients plan their future.
Luckily, having attended many multi-disciplinary meetings, some professionals now see the advantage of having an advocate on board, and I am now starting to work with some GP surgeries and mental health teams to support individuals.
Advocates are here to help, not hinder. Having an independent, professional supporter that the patient can trust and is not viewed as part of the ‘establishment’ can be very useful for the NHS. The onus is on the medical professional to explain the situation to the advocate, and then the advocate has time to sit down with the patient to explain the situation to them and to discuss any queries that they may have.
The patient will then be more relaxed and less confused in assessing their options, and dare I say that this could aid faster recovery? Certainly it helps to reduce stress and anxiety, with benefits for the mental health of the individual or patient.
With a more relaxed and informed patient and family, we can also hope that complaints will be reduced and for far less antagonism between patients, their families and healthcare professionals. This is important at a time when the NHS is at full stretch –health and care professionals are often so busy that they simply don’t have the time to sit down and talk each individual through their options and care plan. They are in urgent need of the support of other partners and professionals and this is where advocates and Third Sector organisations can most usefully intervene.
Let’s start working together
I truly believe that the Third Sector and the NHS can work together in making sure that everyone has fair access to information and services in order to lead healthier lives. Third Sector professionals work out in the community on a daily basis and in my role as an advocate I have been involved with issues spanning health, housing, poverty, safeguarding and many more that influence a person’s overall welfare.
Hopefully I have had an impact on reducing health inequalities and improving wellbeing, especially the mental health of my clients. Local politicians and the Older People’s Commissioner acknowledge the benefit of the independent advocate, and a copy of my three-year report has been sent to Welsh Government following an endorsement from the Minister for Health and Social Services.
The public health workforce is our backbone and our collective knowledge is our strength. To be the best we can be, it is essential that we continue to build on our success by creating the opportunities to learn from each other.
To maximise this potential, Third Sector organisations need to be recognised, supported and involved in the development of the health and care system as a key part of the public health workforce.
I write from my personal experience as an Advocate – there are so many other Third Sector charities and organisations that can be involved in this process, and we should all be linked up to work together in partnership.
We need to be allies, not adversaries. Please – for all our sakes – let’s start working together.
Sylvia Targett is a Bevan Advocate and Advocacy and Information Officer at Age Cymru Gwynedd and Mon.