Further information
- Support groups
- Rare conditions
- Patient Advice and Liaison Service (PALS)
- Complaints about healthcare
- Compensation
Support groups
If your child receives a specific diagnosis, you may be wondering where you can get more information about his or her condition or disability. Many of the most common conditions have local parent organisations which are listed in the Useful contacts page of this site as Local groups for specific disabilities. We also list the most common national organisations for specific disabilities. There are too many national organisations for particular disabilities or conditions for us to list all of them, however, but you can contact us or Contact a Family (CAF) for more details.
Meet the Parents
Contact a Family's sister site www.makingcontact.org allows parents to securely email other parents whose children have the same condition to share their knowledge and experiences.
It was launched in 2004 and has just been given a facelift! Some new features have also been added which we hope will make the service easier to use, for example, many new locations have been added which will make it easier to find people locally.
Come and visit us today to search for other parents and let us know what you think of the new look. Get in touch with Making Contact with any feedback.
Rare conditions
If your child has a rare condition it may be more difficult to get the information you need. However, CAF - which offers support and information to parents of children with disabilities - produces a comprehensive directory of specific conditions and syndromes with details of their family support networks.
Contact a Family also co-ordinates a contact network for parents whose children have a rare condition or no specific diagnosis. You may also be able to get information and advice from Unique, the rare chromosome disorder support group, which aims to link families whose children have similar conditions. Full contact details for these organisations are available in Useful contacts.
Patient Advice and Liaison Service (PALS)
PALSservices have been set up by all NHS Trusts, to provide advice and information about health and health related services. They are a useful source of both local and national information, and will, if they do not have the answers, find the information or find the right person for you to speak to in order to have your query answered.
PALS also assist if you have concerns about local NHS care. PALS staff aim to resolve concerns locally and informally through liaison with the relevant NHS staff, without making a formal complaint. PALS will also advise on making a complaint, what the process involves, and signpost you to the Independent Complaints and Advocacy Service (ICAS) who will provide help and support which is independent of the NHS.
Complaints about healthcare
On 1st April 2009, the government introduced a new process for dealing with patients' complaints about NHS healthcare. The Health Service Ombudsman has become the second and final point of contact for complaints.
Anyone who feels that their complaint has not been handled satisfactorily by their local NHS body or practice can now complain directly to the Health Service Ombudsman. The change removes the need to first complain to the Healthcare Commission, and the process aims to improve the way complaints are handled. The new process has two clear stages from a complainant's point of view: their case is either resolved locally or can be taken forward to the Ombudsman. You could also speak to PALS for advice about taking complaints tot he Ombudsman.
The Healthcare Commission has become part of the new Care Quality Commission.
Compensation
If you believe your child has been the victim of a medical accident and could be entitled to financial compensation, you might want to consider taking legal action against the person or establishment concerned. Of course, a good financial settlement would make a huge difference to a child's long term future, as well as to the peace of mind of parents and siblings. However, it is as well to be aware of the possible drawbacks. You could speak to PALS first to look at other ways of resolving the issue.
Lawsuits can be very expensive, and unless you win you will not get your costs paid. Legal Aid is unlikely to be available. The process can take a very long time, sometimes years. You will need plenty of stamina and, above all, good legal advice. If you do decide to carry on with legal action, you can get free preliminary advice from Action Against Medical Accidents (AvMA). They can tell you whether your case is worth pursuing and can also suggest a good solicitor.