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Report of meeting 'Navigating the NHS maze' London, UK on 11 March 2004:
UK NHS is going through change again right now, so now is a good time for lobbying while they are asking for patient experiences and feedback on services (see local patient consultation events for: Clinical Commissioning Groups, hospital Health Trusts, Care Quality Commission).
Here is the gist of the 3 talks (if you'd like to see the Powerpoint slides, PM me your email):
Kings Fund are monitoring the current NHS changes http://www.kingsfund.org.uk/ and conclude that we must now make what we have work.
NHS England funds specialised services centrally in a separate budget http://www.specialisedservices.nhs.u...al-definitions. This will include budget for 'orphan drugs' and access to meds still going through trials. This will specify available treatment and support for eg rare, autoimmune and genetic disorders.
NHS England Clinical Reference Groups specify new strategies for specialised services http://www.england.nhs.uk/ourwork/co...vices/npc-crg/
Healthwatch is the new watch-dog for health and social care services - Healthwatch England http://www.healthwatch.co.uk/ accept direct calls, but recommend using our local community Healthwatch to make change happen in the local Clinical Commissioning Groups (CCGs) and hospital Health Trusts. Eg this Spring 2014, they did stop the government pushing through permission to share and sell our NHS health record data freely until after more consultation on who can use it ('care.data').
Here are the questions we raised in the audience:
1. Who is in charge of co-ordinating my care?
2. Why does it take so long to get diagnosed?
3. How is the quality of NHS care measured?
4. How is transition from children’s to adult services managed?
5. What is the process for accessing medicines?
6. What can I do if my GP won’t refer me?
Here are some answers as far as we got: http://www.geneticalliance.org.uk/na...m#coordination
This meeting was not just for people with genetic disorders, many with eye troubles, but was for everyone navigating UK health services. Thanks to Genetic Alliance UK, the umbrella group who managed to get funding for the meeting and travel costs.
Discussions on re-designing health services are going on all around the world right now and new government policies are being written. If you've got the energy and feeling well enough, I would really recommend joining in through Patient Support Groups, if only to meet people with similar challenges - the issues are the same for everyone. It's a great time to speak up and change things
UK NHS is going through change again right now, so now is a good time for lobbying while they are asking for patient experiences and feedback on services (see local patient consultation events for: Clinical Commissioning Groups, hospital Health Trusts, Care Quality Commission).
Here is the gist of the 3 talks (if you'd like to see the Powerpoint slides, PM me your email):
Kings Fund are monitoring the current NHS changes http://www.kingsfund.org.uk/ and conclude that we must now make what we have work.
NHS England funds specialised services centrally in a separate budget http://www.specialisedservices.nhs.u...al-definitions. This will include budget for 'orphan drugs' and access to meds still going through trials. This will specify available treatment and support for eg rare, autoimmune and genetic disorders.
NHS England Clinical Reference Groups specify new strategies for specialised services http://www.england.nhs.uk/ourwork/co...vices/npc-crg/
Healthwatch is the new watch-dog for health and social care services - Healthwatch England http://www.healthwatch.co.uk/ accept direct calls, but recommend using our local community Healthwatch to make change happen in the local Clinical Commissioning Groups (CCGs) and hospital Health Trusts. Eg this Spring 2014, they did stop the government pushing through permission to share and sell our NHS health record data freely until after more consultation on who can use it ('care.data').
Here are the questions we raised in the audience:
1. Who is in charge of co-ordinating my care?
2. Why does it take so long to get diagnosed?
3. How is the quality of NHS care measured?
4. How is transition from children’s to adult services managed?
5. What is the process for accessing medicines?
6. What can I do if my GP won’t refer me?
Here are some answers as far as we got: http://www.geneticalliance.org.uk/na...m#coordination
This meeting was not just for people with genetic disorders, many with eye troubles, but was for everyone navigating UK health services. Thanks to Genetic Alliance UK, the umbrella group who managed to get funding for the meeting and travel costs.
Discussions on re-designing health services are going on all around the world right now and new government policies are being written. If you've got the energy and feeling well enough, I would really recommend joining in through Patient Support Groups, if only to meet people with similar challenges - the issues are the same for everyone. It's a great time to speak up and change things