Hello, my name is Mo. I’m a member of the Patient Voices Matter group, run by the Patients Association. We are 10 very engaged, interested and hugely passionate patients from all walks of life and cultural backgrounds. We all have experience of long term health issues.

Despite our differences, our group’s experience shows the NHS is in need of change if it’s going to meet the needs of different cultures and an ageing population that wants a healthy old age.


An issue the group keeps returning to is accessibility of medical appointments. These are a source of huge worry to all of us.

I am a carer for my 26-year-old son who needs 24/7 care because of several complex health issues. He has a tracheostomy, is oxygen-dependant, has bone disease, slow growth development, combined heart and lung failure, and has recently experienced renal disease. He requires detailed care, attention, and time and has a complex hourly medication routine.

He is under the care of several hospital consultants, healthcare professionals, and, of course, his GP. This means he requires regular reviews, face-to-face clinic appointments, adjustments and changes in medication, close monitoring, and record keeping.

This may sound simple, but it is a huge task to organise, check, and update our hospital diary, as we (mum and dad) also have long-term health issues, which is common among the thousands of carers across the UK.

Clashing appointments

The main issues we face as a family is planning all our regular hospital visits. The NHS cannot look at members of a household together, so things go badly wrong when our appointments clash. Sometimes we have appointments on the same day for two of us at different hospitals. Or my son has two appointments on the same day, one in our hometown and then another in a specialist hospital in a different town. This is two different trusts, which are not linked, and they cannot see what has already been booked.

Trying to rearrange clashing appointments means calling different departments, digital telephone queues where you can wait for up to an hour to talk to someone, sometimes you don’t even get to speak to anyone because you get the message: “The department is having difficulties because of COVID-19, please leave a message including your full name, full postal address, hospital number blah blah blah!!”

Three strikes

Another problem is the three strikes and you’re out system that operates. If you cancel or amend your hospital appointments more than three times your file will be sent back to the GP, and you will be taken off the health specialist’s list. This is a way of reducing huge lists of patients still looking to see specialists, and a bad way to help out those who need to make changes. They could be carers, vulnerable adults, patients with a long term illness who may have been unwell on the day of their appointment, patients who need help and assistance with organising their lives or attending a clinic.

Through some hard experiences, we now have telephone numbers, or email addresses of our consultants’ secretaries. We simply contact them directly explaining our situation and they resolve the issue in half the time. It’s a nightmare, though, if they’re on holiday.

Phone or video calls

The pandemic has meant we have the choice of staying at home and having a phone or video call instead of a face-to-face hospital appointment. This a huge ask of so many non-technical people.

Whichever means you choose, call or video, you need to check the phone number the medical service will ring on, make sure on the day your mobile phone or landline is clear of use, has reception, you are hassle free and calm to take the call, have all your meds with you, have made notes to what you want to ask and so forth.

Mobile reception is a real issue. A fair number of Patient Voices Matter members have missed calls due to reception problems and found they’ve been discharged from the consultant’s list. To most this is a nuisance but if you are trying to obtain change in medication that is crucial to your mental health or your long term illness this is hard to accept and can become detrimental to one’s long term health.

A phone or video call at home from medical staff has its own challenges. Do you understand what is being said, can you hear properly, are they speaking too loudly, too fast, in a medical terms way which is just a big whoosh?!

Within the group we’ve talked about how to manage this. Maybe arrange another meeting face-to-face, have a friend next to you at home next time, be better prepared, and also make sure the medical staff fully understand your needs and requirements.