| Please read the below report from Contact a Family
Source: Contact a Family, 16 December 2011
Contact a Family warns that major change is needed in England to ensure NHS shakeup works for disabled children and their families
Contact a Family is concerned that unless NHS reforms make substantial changes to the way patients and the public are able to feedback concerns and views about their local health services, the voices of parents with disabled children will continue to be lost in the system.
Contact a Family is funded by the Department of Health to support the involvement of parents of disabled children in commissioning and improving health services. As part of this work, the charity carried out a survey of parent carer forums[1] about their experience of working with Local Involvement Networks (LINks)[2] and their involvement with health services. The charity received responses to its survey of over half (78) of the parent carer forums in England, with many reporting that they come up against a number of barriers to raising and prioritising disabled children's issues through LINks.
Contact a Family's survey of parent carer forums found that:
.Nearly a quarter (24%) had not heard of LINks and did not know what they do. .23% of the parent carer foums who proactively made contact with their LINk were told that they didn't work with children's services and an additional 21% found that their LINk focused on adult services only. .40% of forums who tried working with LINks said they had not found it at all helpful in improving services for disabled children and a further 25% said that it only helped a little. 24% could not say as they had only just begun working with LINks. Only one parent carer forum reported successful outcomes from working with LINks. .Nearly three-quarters of parent carer forums reported that they are working directly with health managers, commissioners and clinicians for the services their children access, in order to make necessary improvements. As part of the Health and Social Care Bill 2011, LINks will be evolving into local HealthWatch organisations which will have a role feeding back people's experiences of services to the new Health and Wellbeing Board. This board will be responsible for making sure health and social care services work well together and meet the needs of the local community.
Sheila Davies, Contact a Family Parent Participation Manager, said: "The government says they want patients' to be at the heart of the NHS. But our survey shows that the system isn't working to gather an important group of patients' views. Disabled children often require continuing care from a range of health professionals, and report high levels of dissatisfaction with health services.
"It is vital that we get it right for these children and the only way to do that is to listen to the children and their parents about their expereinces of health services and what imrpovements are needed. Therefore HealthWatch must work in a different way to LINks, and support the patient groups most in need of services to have a real say in the way services are provided."
As a result of the survey findings Contact a Family is recommending ways in which the new HealthWatch organisations could co-ordinate local patient and community groups to ensure the voices of different patient groups, including parents and disabled children, are heard by service commissioners and managers.
Contact a Family's recommendations include:
.The government should ensure that local Health and Wellbeing Boards have a defined focus on the delivery and the improvement of services for disabled children. .The government wants user involvement to be embedded at every layer of the NHS. HealthWatch should support this by linking different patient or community groups with the commissioners or managers responsible for the particular service they access. .GP practices, Clinical Commissioning Groups, the NHS Commissioning Board, Health and Well Being Boards and service providers are all required to involve patients in shaping their work. This could lead to a duplication of consultations, public disengagement with the consultation process and, therefore, would be a waste of resources. This could be prevented if HealthWatch coordinate local consultations, make sure consultations are meaningful and target the appropriate audience and share findings of consultations across all relevant organisations. .HealthWatch should carry out targeted work with patient and community groups who require joined-up, integrated services, so that their experience of services is input into Health and Wellbeing Boards and joint strategy plans. As part of this targeted work, HealthWatch should consult with disabled children and young people and their parent carers at suitable venues and at times convenient for them to attend. .HealthWatch should demonstrate how the involvement of patients and the public - including disabled children, young people and families - has made a difference to local service provision. Not only will this help to motivate patients and public to stay involved it will also be helpful in monitoring the effectiveness of HealthWatch's work.
Read the full report Parent Carer Forum Involvement in Shaping Health Services http://tinyurl.com/88v82dz
For a printed copy of the full report please contact Sheila Davies at Contact a Family: Sheila.Davies@cafamily.org.uk or telephone 0207 608 8773.
To find out more about the NHS changes and what they could mean for you please see http://www.cafamily.org.uk/families/parentparticipation/nhsparentcarerpartic ipation/nhs.html
Alternatively try: http://tinyurl.com/89v7tks
To see more resources on planning and delivering health services that meet families needs please see http://www.cafamily.org.uk/professionals/parentparticipation/nhs.html
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