An interview with Sam Goncalves, parent champion

The NHS Digital Social Care Pathfinder programme 2020 has been funding 16 local programmes to implement innovative information technology solutions to improve the sharing of information between health and social care.

One of the areas identified as needing improvement was the About Me section in the Core Information Standard which is used in shared care records and digital care and support plans. The Professional Record Standards Body, PRSB, was commissioned to support this work.

The About Me section is for people to share important information about themselves with others who support or care for them to enable person centred care and support. This may be different from the information that a professional records about a person as it is what the individual wants to share and it will be what is important to them. It is only shared with people who have a legitimate reason for accessing the information.

Andy Minnion, Rix director, met with Sam Goncalves to find out more about her work as Project Citizen Lead with the PRSB.

Tell us about your role as a parent carer representative with the PRSB

The role of Project Citizen Lead in the development of standards has been to represent the interests of the public in the design and development of record standards, an area that is very important to me as a parent carer of a young adult with complex needs. It is important to drive change in record standards by promoting themes that patients really care about. Patient centred outcomes are just as important as outcomes that focus on good care.

Why is it important to have an Integrated Care Standard?

Individuals and their carers should have a voice in their health decisions and autonomy in deciding about their care, treatment and support. People are the experts on themselves and their values and preferences should be respected. Sharing About Me information with both health and care providers will give people that voice. Information you won’t necessarily find in a medical report – information like how an individual communicates, how they make choices and what strategies could make them feel more relaxed, reducing stress and anxiety.
For those who are physically disabled, knowing and understanding not only when they need support but also when they do not, to ensure they are always treated with dignity and respect.

“Many professionals appear to be trying to fit people into systems. About Me is about turning that around so that systems have to fit around the person. The reasonable adjustment is the task of the service to adjust to the person not the other way around.”
Tricia and Tony, parent carers

What is your experience of the importance of About Me information?

I have been sharing About Me information about my son Shane for 8 years using digital technology by inviting all carers and professionals to view Shane’s Rix Wiki. Knowing how Shane communicates, what he likes and dislikes, what’s important to him, when to support him and when to allow him time to be independent is all vital information to provide good care and support.

“The vision from the start was to get proportionate About Me information at the forefront of every health and social care record, even in an emergency”
Keith Strahan, Clinical Lead, Social Care Programme at NHS Digital.

Why is ‘About me’ information so important to capture in our standards?

Having access to About Me information reduces the number of times people have to tell their story. This not only saves time but also a lot of stress and anxiety. Many patients like my son who receive social care have a long-term disability. Their “story” to retell can often be extremely upsetting. In our case my son contacted meningitis 25 hours after he was born and as a result suffered brain damage causing cerebral palsy, blindness and a severe learning disability. I have lost count how many times I’ve had to retell my story – retell the details of the most upsetting, terrifying period of my life. Think about the most upsetting time in your life and imagine how you would feel if you constantly had to relive that day. Reducing the need for this retelling is of great benefit to both patients and family carers.

When we know how best to support a patient in hospital, we not only keep the patient and staff safe, the patient also receives a better quality of service which results in healthier and happier people.

photo of young people
Sam with Shane, Declan with his cousin, Caitlyn

A couple of weeks into lockdown I ended up in A&E with my son. He had a large peanut stuck up his nose and, as someone with a profound learning disability, this quickly became a medical emergency. As Shane is visually impaired, I explained to the ER nurse that he should allow Shane to feel the blood pressure arm cuff before placing it on his arm. This would help him feel more relaxed and more prepared for what was going to happen. Responding positively to his signing when he signed finished and reassuring him that it was almost finished enabled him to tolerate the whole procedure. Discussing with the doctor the need for Shane to be sedated using a mask and not an IV meant the right treatment plan was put in place. If I had not accompanied Shane and this vital information had not been shared the medical team would have tried sedating Shane through an IV which was their initial plan. This would not have been successful and he would have become extremely distressed displaying behaviour which is very difficult for everyone to manage. This would mean more time spent in hospital, as an alternative treatment plan would have become necessary.

This is an example of the type of information in an About Me record which, when shared, can make a huge difference to both patient and staff safety. We can avoid prolonged hospital admission and unnecessary patient distress by small reasonable adjustments offering treatment that is appropriate and safe. And for hospital admissions during the pandemic, this About Me information becomes even more important as people often end up going into hospital without the people that know them best.

Tell us about using the Rix Wiki to capture the voice of parents and carers in your work with PRSB

During our consultation period we had to think outside the box as we were unable to hold face to face focus groups during the pandemic. People had to stay at home and work from home and many of the people we wished to engage with were shielding or self-isolating. Using a Rix Wiki for this engagement seemed the obvious solution to me.

The revised approach involved asking people in care homes, individuals receiving social care at home, informal carers and community-based professionals to record videos or audio clips or provide written evidence responding to questions about what information they would include in an About Me.

Online surveys were one part of the overall consultation approach in the development of the standards, and an accessible version was developed using Rix EasySurvey. This enabled those with additional needs to record their views.

“Health and care professionals need information about what matters most to people so that they can provide care that genuinely meets their personal needs. PRSB sets standards for sharing information and we worked earlier this year with Rix Media and used their EasySurvey tool to learn from people with complex needs what information they think is important to share about themselves to improve care. EasySurvey helped us get excellent feedback that will help improve care.”
Helene Feger, Director of strategy, communications and engagement, PRSB

By listening and engaging with patients and their carers we can develop standards that reflect what’s important to them.

The overall objective of the pathfinder programme was to accelerate improvements in both health and social care. Good care alone is not enough for me. Good care keeps you alive and safe but improved care is where we are listened to, valued and understood, our goals and health ambitions are taken into account and support is offered to help us to achieve these.

PRSB Standards