Patient Voices Matter (PVM), our lived experience advisory panel, brought together people passionate about wanting to share their experiences to make a difference to other patients.

Members of PVM came from a range of ethnicities, sexual orientations, conditions, ages, regions, and religions. The panel included neurodivergent people, people with learning disabilities and with mental health conditions. Between them, they had experience of homelessness, disability, numerous diseases, and caring responsibilities.

The members' range of experiences, gathered in one group, was so valuable to us, as people from underrepresented communities are often consulted separately. During PVM meetings, members raised and considered several themes.

Accessibility

• Some people need support to fill in forms to register with the GP as they are not accessible.
• If people don’t have internet access, they can’t book appointments online.
• Emails and phones are not answered at the weekend.
• When people are discharged from hospital, but then need healthcare again, they must go through the long process from the beginning all over again.

Appointments

• It can be a difficult to get a GP appointment because of  long waits or complicated booking systems.
•  This can make you feel you have no control and can lead to anger, which results in you being seen as a difficult patient.
• Family members can have appointments booked at the same time, which means appointments need to be rearranged if family members need to attend together.
• Phoning to change an appointment is complex, often with multiple options. A direct number with a single point of contact will make it easier and better co-ordinated.
• Healthcare professionals often change appointments without agreeing this with the patient. This can lead to patients being frustrated, appointment times not working for the patient, and missed appointments. It also shows a lack of working in partnership with the patient.

Mental health

• Appointments with GPs about mental health can last fewer than five minutes, leaving the patient feel they are not being listened to nor receiving the support they need.
• Patients are often signposted to talking therapies, but then can’t get through to the providers of those services.
• Mental health needs to be taken more seriously.
• For someone with mental health issues to have to keep repeating their medical history to different services, it can cause traumatic flashbacks to those episodes of ill mental health
• People with post traumatic stress disorder can get panic attacks when their phone rings.

Person-centred care

• People need to be treated with dignity and as a person.
• The basic principles of the NHS are so important, but not all healthcare staff  adhere to them.

Phone calls

• It is hard to do a health check over the phone if you have autism or a learning disability as the healthcare professional can’t see you and pick up on things such as facial expressions. This means the professional may miss something.
• If people don’t know what time the call will happen, they can’t ensure they’ll be in a confidential environment.
• Unpredictability can be stressful for people with autism; it is not accessible to be told you’ll receive a call between 9 and 5. To make it accessible for all, patients should be told a time that they will be phoned.

Other issues

• The NHS needs to be more inclusive of people with learning disabilities and neurodivergent people.
• Concerns about so many people resorting to having private treatment because they are having to wait so long for appointments.
• There is an unspoken power imbalance with specialised healthcare professionals (HCPs) such as surgeons. “We have to play games to get what we want.” 
• The health and social care system is a postcode lottery.

"This is a positive experience I will never forget and PVM my favourite group I’ve been in. I have loved hearing stories. I have learnt about mental health, autism, and ADHD, which I’d never had the opportunity to learn about before. I like learning from others as a wider variety of people."