Many older adults and carers tell us the same story. One clinic says, “Ask your GP.” The GP says, “The hospital needs to decide.” Social care says, “That’s health, not us.” You repeat the same history again and again, yet letters still go missing, medicines are changed without everyone knowing, or you get three different answers to the same question.

It can leave you feeling invisible or “awkward” for speaking up. In reality, what you are noticing is not personal failure. It is a system problem: services that were never designed with your whole life in mind. This guide gives you language and tools to describe calmly, but firmly, what is happening, how it affects you, and what you need next.

A Rare Reframe: You Are Not “Complaining” – You Are Providing Missing Data

Health and care systems see slices of your life: a clinic visit here, a scan there, a care package review somewhere else. What they do not automatically see is the burden of joining it all up – the phone calls, the travel, the worry, the hours on hold.

When you speak up, you are not just “making a fuss”. You are supplying data that the system is missing:

• “I am being asked to tell my story from scratch at every appointment.”
• “Changes made in hospital are not reaching my GP or carers.”
• “I am getting letters that contradict each other.”
• “The way appointments are scheduled is making me sicker, not better.”

Professionals cannot fix what they do not know. Your words are part of the evidence that services need in order to improve – especially for people with multiple conditions, hidden disabilities or caring responsibilities.

Step 1 – Name the Pattern, Not Just the Incident

When you are exhausted, it is natural to focus on a single disaster: the letter that never arrived, the cancelled transport, the clinic that lost your notes. Those moments matter, but what really drains people is the pattern over months and years.

To make that visible, you can use this three-part structure:

• What keeps happening – “Over the last six months…”
• How it affects my daily life – “This means that…”
• What I need – “I need one person or team to…”

For example:

• “Over the last six months, hospital changes to my medication have not reached my GP or carers. This means I end up with different instructions from different people and I do not feel safe taking my tablets. I need one person or team to check that any change is written clearly and shared with everyone involved.”

This kind of statement is more powerful than: “No one ever tells me anything.” It shows that you can see the pattern and the impact on your safety.

Step 2 – Use “Calm but Firm” Sentence Starters

When you are frightened or angry, your body prepares for either attack or retreat: shouting, or giving up. Calm firmness is the middle path. It uses steady language and clear boundaries. Here are some sentence starters you can take to your GP, hospital clinic, social worker or Patient Advice and Liaison Service (PALS):

Describing the breakdown

• “I’m noticing that the different teams looking after me are not talking to each other.”
• “I get different messages from my GP, hospital and carers about the same issue.”
• “Discharge plans are not matching what community teams can actually provide.”
• “I am being asked for information I have already given several times.”

Explaining the impact

• “This is leaving me feeling unsafe about my medicines.”
• “This is increasing my risk of falls / hospital admissions.”
• “This is making my carer burn out; we are both exhausted.”
• “This is making me consider not attending appointments because I don’t have the energy to repeat everything again.”

Stating what you need

• “I need one clear plan that everyone follows, written down in plain language.”
• “I need one named person or team I can contact when things do not match up.”
• “I need you to tell me who is responsible for joining this up – I cannot do it alone.”
• “I would like this concern recorded in my notes so it is not just my word against the system.”

You are not asking anyone to work miracles. You are asking for clarity, safety and respect – basic rights in any caring system.

Step 3 – Turn Your Story into a Simple “Joining-Up Map”

A powerful, rare tool you can bring to appointments is a one-page joining-up map. On a sheet of paper, draw three columns:

• Column 1 – Service / team
  GP, heart clinic, lung clinic, memory clinic, social worker, home care agency, pharmacist, PHAT Zoom sessions.
• Column 2 – What they do for me
  “Prescribes medicines and monitors blood pressure”, “Manages heart failure”, “Reviews memory and thinking”, “Helps with washing and dressing”, “Delivers and explains medicines”, “Supports my movement and confidence”.
• Column 3 – Where it breaks down
  “Letters from heart clinic not reaching GP”, “Carers not told about new walking aid”, “Pharmacist not informed about dose changes”, “No single plan everyone can see.”

Take this map to your GP, consultant, nurse or PALS and say: “I’ve tried to show on one page where things are not joining up. Could we look at this together and see who can help fix which part?”

This moves the conversation from “you versus them” to “us versus the problem”.

Step 4 – Choosing the Right Route: Conversation, PALS or Formal Complaint

Not every problem needs a formal complaint. But some do. A simple way to decide is to ask three questions:

• Is anyone in immediate danger?
  If yes, seek urgent help (999, or emergency clinical advice) first. Complaints can come later.
• Is this a one-off mistake, or a repeated pattern?
  One-off issues can often be sorted by speaking with the staff involved or a manager. Patterns of poor communication may need PALS or a written complaint so they are not ignored.
• Have you tried raising it informally already?
  If you have spoken up and nothing has changed, it may be time to escalate so your concern is recorded and investigated properly.

In many NHS organisations there are three main routes:

• Local conversation – with a GP, consultant, ward manager or team lead.
• PALS (Patient Advice and Liaison Service) – to help resolve issues informally, explain systems and advise on complaints.
• Formal complaint – a written account of what happened, often with support from advocacy services.

You are entitled to independent advocacy for formal NHS complaints in England if you want it. Your local PALS, council or Healthwatch can signpost you to these services.

Step 5 – Protecting Your Energy While You Push for Change

Speaking up about a system that is not working can be draining, especially if you already live with fatigue, pain or memory problems. To protect yourself:

• Decide how much energy you can realistically spend on this each week (for example, “one phone call and one letter only”).
• Ask a trusted person to help draft letters, make calls or attend meetings with you.
• Keep a simple log of contacts – who you spoke to, when, and what was agreed.
• Build in small rituals of care before and after difficult calls – a short walk, a favourite programme, gentle chair exercises while the kettle boils.

If it all feels too much, remember: you are allowed to pause. Sometimes waiting until you have support in the room – a family member, friend, or advocate – is the most sensible move.

Linking This with Other PHAT Tools

Joining-up problems usually show up in more than one area of life. You might find it helpful to combine this guide with:

• Your one-page health summary – Creating a One-Page Summary of Your Health Conditions, so every professional sees the same core information.
• Understanding test results and letters – Making Sense of Hospital Letters and Test Results, so you can spot when information has not been shared correctly.
• Appointment mapping – Coordinating Appointments When You Feel Overwhelmed, to show how diary overload is linked to poor coordination.
• Review preparation – Preparing for Annual Reviews and Long-Term Condition Checks, so you can raise joining-up issues in a structured way at planned reviews.
• Exploring other topics – our PHAT Health Pathways let you shuffle to a new focus such as mood, memory or falls, depending on what feels most pressing right now.