Patient Network

The Patients Association has always been keen to work on the needs of patients with other organisations that share our vision of a patient centred heath service. Making the voice of the patient – your voice – heard by those people who make the decisions about services is often easier when its united with others.

In 2009, we established the Network for Patients, a group of over 30 charities who come together to speak with a louder voice about issues that are common to us all. Now with over 40 charities as members, the Network for Patients continues to grow.

These charities range from large nationwide campaigns to smaller support groups. We believe that all charities share certain beliefs on the need of patients including better information and support. By coming together and speaking with one voice on the issue we share common ground on, the Network for Patients is able to make a bigger impact than if each individual charity campaigned on its own.

The purpose of the Network for Patients is to provide a united and a louder voice for patients, their families and their carers to speak up on areas where member organisations have common interests and to campaign and lobby the Government on those issues. We seek to keep patients at the centre of the health and social care agenda and to raise awareness of key issues in the public and policy makers.

Annual Meeting 2012

The Network for Patients held its Annual Meeting in November 2011, inviting all the members of the Network for Patients to join us to discuss what the most important issues were for patients. The Annual Meeting was an opportunity to share information with other charities and to discuss the work of the Network for Patients.

We were also joined by Jill Morrell, Public Communications Lead at the Care Quality Commission (CQC), who spoke to the members of the Network for Patients on the ways in which the CQC engages with charities and voluntary sector bodies. Baroness Masham of Ilton, a Crossbench member of the House of Lords, also joined the discussions on the Health and Social Care Bill.

There was a great turnout and we were particularly pleased to see a lot of new charities there, many of whom have agreed to join the Network for Patients as full members.

We looked at the success of the year gone by and planned ahead for 2012. We had a very interesting and productive day and look forward to updating you on the campaigning activities decided at the meeting as we progress.

GP “Duty to Refer”

One of our key pledges from our manifesto, the GP “Duty to Refer”, focuses on the need for patients to be able to trust that their GP in making sure they are getting access to the best treatment and the best services. Access to information is the best way to make sure this is happening and patient support groups and charities are ideally placed to provide this information. GPs cannot be expected to be experts in all fields and so it makes it all the more important for them to signpost patients and the public to organizations which have the expertise. GPs should actively support patients in finding patient support groups and charities that could help them with managing their condition.

While signposting to information and support services is of course important, it is even more vital that when a patient is referred for other treatment by their GP that they can rest assured that they are being referred for the best and most appropriate treatment for their condition, regardless of the cost. Patients often come to their GP when they are at their most vulnerable and it is essential that there is an implicit trust that they will be seen and treated by the right person.

Although the Royal College of General Practitioners has issued guidance on the need for GPs to signpost patients to charities which can provide appropriate information, this is very rarely the experience of most patients. We believe that stronger guidance needs to be issued to ensure patients have access to the advice and support that charity experts can provide.

We met with the Parliamentary Undersecretary of State for Health, Earl Howe, to discuss the GP” Duty to Refer” and put our concerns regarding the lack of present guidance in February 2011. This was a very productive meeting and led to several new lines of work on the “Duty to Refer” including approaching the National Institute for Health and Clinical Excellence (NICE) and the Chief Medical Officer to look at ways the “Duty to Refer” could be embedded into the workings of the NHS. We are also looking into carrying out a pilot of the GP “Duty to Refer”.

We continue to work hard on this pledge and will keep you updated on our progress.

Listen up coverage on the BBC website

Listen Up

This has been an exciting year in the world of health policy and never before has the landscape changed so rapidly with the Coalition Government’s proposed reforms to the NHS passing through Parliament. When the Government announced that it was pausing the progress of the Health and Social Care Bill through Parliament in order to hear the views of patients, the public and professionals, the Network for Patients, along with other charity coalitions, decided to submit 6 statements on the reforms which we believed were common to all of our member organsiations. They were:

  1. Ensure GP Consortia effectively engage with all patients and put them at the heart of their plans.
  2. Improve integration across health and social care by strengthening the role of health and wellbeing boards and the NHS Commissioning Board.
  3. Create a Healthwatch that is independent, well-resourced, transparent and able to act as an advocate for all patients.
  4. Include measurements for outcomes of the most vulnerable.
  5. Ensure children’s services are embedded in health and social care.
  6. Improve access to specialised services for those with complex needs.

These were called the “Listen Up” statements and were widely covered in the press by newspapers and the BBC.

By speaking together with one voice, we were able to make a bigger impact than if we have submitted our views to the Government on our own. By working together, we can effect a bigger influence on policy makers, to make the changes that patients want and need.


Why the Meningitis Trust is a member of the Network…….

“The Network for Patients enables health & social care charities to work together on areas of common interest and this is vital. As a united voice, we have a far greater opportunity to influence the matters that are so important to the people we all exist for – our beneficiaries. At the Meningitis Trust, one of our biggest challenges is ensuring people know about the unique range of free support available to them after meningitis. One of the best ways of empowering individuals with this knowledge is through their GP, recognising that a GP is always notified if one of their patients/families has been affected. We are therefore delighted to be part of the Network for Patients as it leads on the fight for the “Duty to Refer” to be included in the NICE quality standard. If we can secure this on behalf of everyone whose life has been, or will be, affected by meningitis, it means we are one step closer to ensuring no-one has to suffer in silence after meningitis”

Sue Davie, Chief Executive
Meningitis Trust, Member of the Network for Patients Working Group