This could be for a relative, or, more officially, for someone you don’t know. The other way is to “help out”, so I’m going to explain what I do to help the NHS via
“Patient Involvement”.
I’ve been a long-term Immunology and Rheumatology NHS patient and began
to get involved in volunteering when I was diagnosed with an
immunodeficiency. The first thing I did was to find out as much as I could about my diagnosis online. However, I found joining organisations connected to my condition, such as Immunodeficiency UK, and The Patients Association to be far more informative. Both organisations provide a great deal of useful information to their members, and I’d advise all patients to join similar organisations to get
accurate information about their long-term conditions.
They can provide opportunities to get involved, including providing feedback on patient information leaflets, for example, for Immunodeficiency UK and for my local hospital, to ensure the leaflets they produce are” patient-friendly”
and easy to understand.
After I retired from teaching, I was able to do more. I joined other organisations
that wanted patients and carers to get involved; by giving the patient
perspective about medical initiatives. This is group work where the
patients/carers can give the “patient's point of view” about various medical
topics. Over the last decade, I’ve been part of several discussion forums
attended by doctors, nurses, hospital management and relevant charities. The forums enable me to be as informed as possible about future changes to NHS policies and initiatives which may impact me and others with immunodeficiencies.
I’ve also attended the Patient Involvement Group, Carers Group and Immunology Department Business meetings at my local hospital. Meetings are usually held online, so there’s no need to find a parking space at a busy hospital! The hospital welcomes and encourages patient involvement and it’s
an opportunity to be one of the “Patient Voices”, playing a small part in the
day-to-day organisation of the hospital.
Many GP practices and hospital departments have also set up Patient Forums or Patient Participation Groups (PPG’s). Patient Participation involves a group of patients offering their perspective on the services provided. They serve to improve communication, encourage patients to take more responsibility for their health and provide practical support. Each group determines its own activities according to the needs of the patients and the services provided.
They’re intended to improve co-operation between healthcare providers and the patients under their care. It should be self-organising and patient-led, ideally with help from the hospital or GP practice concerned. However, this is often not the case and can lead to the collapse of the group if medical staff are unable to support it. Despite this, when proper support is provided, PPG’s and
hospital forums can be worthwhile for the patient and useful to the service they are supporting.
I’ve been involved in good, well-supported groups that have been successful but also in poorly supported groups that have sadly failed. However, I keep on trying to “do my bit” and be more involved in my own healthcare and to do my best to support the medical staff who look after me. What do I get in return?
It’s not for everyone, but it keeps me busy and my brain active. I know more about my own condition than most, and I get to visit many different hospitals
around the country.
So, if you are interested, get stuck in and try helping your GP practice, your immunology centre or local hospital. Who knows what your volunteering can lead you to experience?
Opportunities for getting involved
.png)
.png)
