Bridging the Gap is a report from the NHS in the Midlands that looks at how people with inherited bleeding disorders get information about their treatment. These conditions, like haemophilia, are long-term. People often need to make choices about their care throughout their lives.
Treatments are changing quickly. There are now more options than before, and some are new and more complex. Because of this, it is important that people understand their choices and feel able to decide what is right for them.
The NHS wants patients and staff to make decisions together. This is called shared decision making. But this can only happen if information is clear and easy to use.
To help understand this better, a survey was carried out in Birmingham, Leicester and Nottingham and included 207 people, including patients and carers.
The survey asked how people get information, how well they understand it, and how confident they feel making decisions.
The results show that most people feel confident talking to their care team. They said they can understand written information and feel able to ask questions. This shows that people trust their doctors and nurses.
However, many people find it harder to compare treatments. While they understand information, they are less sure when they have to choose between options. About one in three people said they were not sure how to weigh up different treatments. This shows a gap between having information and being able to use it.
Most people get their information from their clinical team. Many prefer to talk about treatment during clinic visits. This shows strong trust, but it also means people may not use other sources of information very much.
People also said they want to know more, especially about new treatments. Around two-thirds said they would like more information about new and emerging options. They also want to understand side effects and how treatments work.
Most people said they do not struggle to find information. But around one in four said they either found it difficult or were not sure. People said they would like information to be simpler, clearer and more suited to them. Some also said they need more time to ask questions.
Overall, the report shows that people trust their care teams and want to be involved in decisions. But many still need more help to understand their options and feel confident choosing between them.
You can read the full report below.
Recommendations
Recognise and improve the role of clinical teams in sharing information
Most information about treatment is shared during clinic visits. This means it is very important how staff explain things and talk through options, especially when treatments are new or unfamiliar. Clinical teams should be supported to improve how they communicate, through training and reflection. This will help them explain choices more clearly and support better conversations with patients. Staff also need to be aware of how power and trust can affect these discussions, and make sure patients feel comfortable asking questions and sharing their views.
Read the full report and recommendations by downloading Bridging the Gap.
Help people understand and weigh up their treatment options
Many people feel confident talking to their care team, but some still find it hard to compare treatments and decide what is best. Patients need support not just to receive information, but to understand and use it. This means helping them think about the pros and cons, ask questions, and explain options in their own words. Clinical teams can help by spotting where someone may need more support and tailoring information to their needs. This is especially important for people with milder conditions who may have less regular contact with services.
Read the full report and recommendations by downloading Bridging the Gap.
Use simple tools to support better conversations in care
Patients can be better supported if they have simple tools to help them prepare for appointments, take part in discussions, and remember key points afterwards. This could include question prompts, checklists or short summaries. These tools should be easy to use and based on what patients say they find helpful. They should also fit into normal clinic appointments without adding extra burden, giving patients time and space to take part in decisions.
Read the full report and recommendations by downloading Bridging the Gap.
Make it easier to find and use helpful information
Most people rely on their clinical team for information, and fewer use other sources like websites or patient groups. This suggests that useful information may not always be easy to find or well shared. Services should do more to promote trusted resources and make sure they are easy to access. Existing tools and information should be clear, relevant and used more consistently, so patients can get support both inside and outside clinic visits.
Read the full report and recommendations by downloading Bridging the Gap.
Give clear updates about new treatments
People want to know more about new and developing treatments, including how they work and what the risks are. Services should provide regular updates in clear, simple language. Staff need to stay up to date so they can explain new options with confidence. Information should be shared in different ways to suit different people, including through events, written materials or discussions during appointments.
Read the full report and recommendations by downloading Bridging the Gap.
Improve engagement with all communities
Some groups are less likely to be represented or involved, even though the Midlands is very diverse. Services need to do more to reach and support people from different backgrounds. This includes using clear language, working with community partners, and designing services together with the people who use them. By doing this, services can better understand different needs and make sure care and information are fair and accessible for everyone.
Read the full report and recommendations by downloading Bridging the Gap.
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Last reviewed: 29 May 2026