By Orla Fitzsimmons, Policy, Campaigns & Public Affairs Officer.

Every day, we hear from patients through our helpline, focus groups and surveys. Whatever the topic is, one thing unites all patients: clear, accessible information is needed to help them better understand their health and care, their options, and the system.

In our recent work, we’ve heard from patients regularly about confusion caused by the system, making it difficult to navigate. This poor communication has led to patients not knowing where to turn when they can’t access medications, safeguarding issues, and little to no clarity on visiting rights.

“At first, I wasn’t given a lot of advice or information. It’s more accessible online now...but at the time I felt completely lost.”

While conversations continue at both the national and local levels to decide how to best action the 10 Year Health Plan, patients on the ground are still facing the same challenges. We now need clear implementation plans laid out for how patients will get the information they need in a way that is accessible to them, while delivering new initiatives in partnership with patients.

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Communication breakdowns

In August, we spoke to patients about their experiences of safeguarding. A key theme throughout the focus group was the lack of communication. All 10 patients in the focus group shared examples of being left in the dark, with little to no information about their own or their loved one’s care. This had extreme results, including threats of children being removed from their parents, and family members having no clear information about potentially unsafe situations.

"I was informed that a safeguard would need to be raised on some occasions, however, on other occasions I was simply not informed. So, how could I feel supported if I was not informed?" - Patient quote from recent focus group on patient experiences of safeguarding

These experiences aren’t just limited to safeguarding cases. Our helpline hears from patients each day, who are confused by the complicated healthcare system. Recent helpline calls about poor communication vary widely. Patients not only find that communication to them is poor, but also that different services within the system do not speak to each other.  One patient was recently left in an extremely stressful situation, following their mother, who has Alzheimer's and lacks mental capacity, being resuscitated in hospital. Despite being both next of kin and lasting power of attorney, the caller received no information about her mother’s diagnosis, treatment, or discharge.

When patients do not receive the information they need, it impacts everyone involved in their care. Not only is the patient themselves left in the dark, but their loved ones have no knowledge of how to support them, and their treatment becomes disjointed. However, it doesn’t have to be this way. With increased partnership with patients, they can share how they best receive information and have a role in co-designing communications. This can include establishing formal partnership opportunities so patients can sit alongside system leaders from the very beginning. This would increase the effectiveness of the communications from the very beginning and ensure patients get the information they need.

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Medicines shortages and unregulated medicines

“It is said that you should not abruptly stop taking the (mental health) medication because of the side effects. Yet that is exactly the position I was placed in by the NHS who stopped all my medication without consultation, and then removed me from the practice. [This] meant that I was being cut off abruptly from a medication, which is a patient safety issue…..if I told the [legitimate pharmacy] that the doctor stopped all my medication, then it's more than likely they would refuse to prescribe it for me, so then I would be left without [medication] and with nowhere to go. So it would have been counterproductive to me to find a legitimate online pharmacy.”

Our focus group on unregulated medicines highlighted a lack of information when things go wrong. People told us they felt "desperate" and had "no choice" when their prescriptions stopped without warning. The impact on people's lives is serious. They described having to become their own doctor without any medical training, knowing they're taking risks with their health because they can't get the information they need when they have nowhere else to go. While social media adverts do influence some people, the real problem is a health service that forces patients to choose between getting the medicine they need and staying safe. As one person put it, they were being "put in a position" where buying dangerous drugs online became "the only choice you're left with”.

The feedback we received from patients pointed towards the general lack of awareness about resources that can inform them of the dangers of unregulated medications. Patients provided recommendations on how public information campaigns can support patients to fill in the gaps when things go wrong. This includes messages empowering patients to make safe choices, offering tips for spotting fake websites, and developing tailored messages for different audiences. This will ensure patients have the information they need, in a way that is accessible to them.

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Visiting loved ones

In August, we ran a focus group on Regulation 9A. Regulation 9A outlines patient rights and healthcare provider responsibilities around visiting and accompanying in care homes, hospitals and hospices in England. Our focus group on hospital visiting revealed that communication problems from the pandemic continue today. Most patients weren't informed about Regulation 9A - the visiting rules introduced in 2024 - or what their rights are. Without clear information, patients and families faced confusion and distress, with some visitors turned away without explanation. One patient needed his wife with him constantly during recovery but she was limited to just two hours daily:

"It was so difficult for me to understand, it made me feel somehow like maybe there was some kind of bias actions there, but I got to understand that there was a policy." - Patient quote from our Reg9A focus group’

When a loved one is in hospital or a care setting, family visits provide peace of mind and improve the patient's mental wellbeing. In July, we worked with John’s Campaign and Care Rights UK to deliver evidence to module six of the Covid Inquiry, focusing on social care. During the pandemic, we heard calls through our helpline almost daily, with patients unsure of their loved one's health status, and patients lacking capacity in care homes confused as to why their usual support system was unable to visit them. This caused unimaginable trauma for all involved.

The lack of proactive communication, both during the pandemic to now, meant patients had to piece together information themselves from websites and passing comments from staff. When policies directly affect whether someone can have loved ones with them during frightening medical situations, clear communication is paramount.

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Empowering patients through better communication

While our work this quarter has spanned a broad variety of conditions and experiences, many of the issues highlighted by patients could have been addressed with clearer communication. Individual healthcare professionals can’t tackle medicines shortages themselves, but they can ensure that patients receive the information they need, so they don’t feel like their only choice is to seek out unregulated medicines online. There will always be safeguarding concerns that need addressing, that is the nature of health and care where risk must be balanced to produce the best outcomes for patients. But no one should ever be left in the dark about their own or a loved one's care. It is crucial for hospitals and care homes to ensure the safety of all patients that they care for. But increased patient awareness of when they are allowed to visit, and why these regulations are in place, could have prevented so much heartache and trauma for loved ones, both in the pandemic through to now.

In short, a patient who is informed is a patient with power. Power over their health and care, their medicines, their treatment paths. Power to live their life to the fullest extent. Without partnership there is no power, and without power, there can be no partnership. As the 10 Year Health Plan takes shape, this must be its foundation: informed patients, empowered choices.

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Our calls to action:

1. The government and NHS must prioritise clear, accessible information as a core part of high quality care
2. Healthcare providers should make information accessible to all, by developing tailored information strategies that meet the diverse needs of different patients and communities
3. Design services with patients, instead of for them, by establishing formal partnership opportunities so patients can co-design and develop communications from the outset
4. Allow for feedback loops. As communities change and the needs of patients move in different directions, update and adapt communications to reflect the needs of patients.

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