All the staff we came into contact with were outstanding. They made a traumatic time much easier to bear.Family of a patient

All quotations are used with permission.

Accompanying your relative, friend, or neighbour to clinics and other appointments or speaking to people on the phone means that you will begin to meet various professionals either for health or social care. A good way forward is to develop these contacts so that you become part of the team working together to share skills and understandings which help the patient and yourself.

In fact, it is important for you to help by giving a picture of how the patient has been managing and their wider circumstances including, of course, how you are managing.  From this, work together a realistic understanding builds about how the patient manages and what additional support, if any, is needed for you both.

It’s useful to have a notebook and begin recording the names and contact details of different people in the team and note what their roles are. This is handy because it means that you can contact exactly the right person when you need to. It’s also helpful to keep a note of any meetings and their conclusions. This can help you feel more organised and less open to anxieties about who might be doing what and when.

It’s also worth bearing in mind that it is often easier to make an appointment to see the professional you’d like to meet rather than just turn up and hope to catch them.  Remember that sometimes they will not be able to share information because of the confidentiality of the patient.

Finally, if you are someone – adult or under eighteen – who provides ‘regular and substantial’ care you are entitled to ask your local social services for an assessment for support in your own right.  This is called a Carer’s Assessment and you can ask your local social services to assess you.