Funding for GES procedure
Applying for and obtaining the funding for the GES implant surgery on
the NHS can be quite complex and long winded.
The process:
Initially the consultant or surgeon that has recommended this treatment will instigate an application for special or exceptional funding to your local ‘patient care trust’ (PCT) or ‘health board’ (HB). They will need to provide PCT/HB with as much information as possible, and include the latest statistical data on this therapy as well as an outline of your medical conditions.
The case is usually reviewed by a specially convened panel made up of clinicians, administrators and lay persons – it is highly unlikely that any of these panel members will have specialised knowledge of gastroparesis. They will base their decision on not only the application submitted, and statistical data available but also on the National Institute for Clinical Excellence (N.I.C.E) guidelines for this procedure. At present the N.I.C.E guidance does not stipulate automatic funding for the procedure, so it is very much dependant on the application submitted and the funds available in that area.
Unfortunately you have to consider the fact that Gastroparesis is a rarity and most clinicians may never come across a case during their whole career. As a result, many clinicians may not have up to date information or knowledge about this condition – it can sometimes be a ‘learning curve' for everyone involved.
There is no set time scale for these applications; it can prove to be a rather slow process, often taking months for a final decision.
There are no guarantees that your PCT/HB will support your case, although it seems that the agreed funding>refused funding ratio is gradually improving as more of these procedures are being done in the UK.
Note: (March 2013) - A draft publication by the NHS Commissioning Board 'Clinical Commissioning Policy Statement: Gastric Nerve Stimulation for Gastroparesis' published December 2012 states that GES will not be routinely funded for treatment of diabetic or idiopathic gastroparesis. This document has not yet been formalised as data is still being gathered from specialists in the field. A formal revised update of the NICE guidelines is expected Summer 2014.
The process:
Initially the consultant or surgeon that has recommended this treatment will instigate an application for special or exceptional funding to your local ‘patient care trust’ (PCT) or ‘health board’ (HB). They will need to provide PCT/HB with as much information as possible, and include the latest statistical data on this therapy as well as an outline of your medical conditions.
The case is usually reviewed by a specially convened panel made up of clinicians, administrators and lay persons – it is highly unlikely that any of these panel members will have specialised knowledge of gastroparesis. They will base their decision on not only the application submitted, and statistical data available but also on the National Institute for Clinical Excellence (N.I.C.E) guidelines for this procedure. At present the N.I.C.E guidance does not stipulate automatic funding for the procedure, so it is very much dependant on the application submitted and the funds available in that area.
Unfortunately you have to consider the fact that Gastroparesis is a rarity and most clinicians may never come across a case during their whole career. As a result, many clinicians may not have up to date information or knowledge about this condition – it can sometimes be a ‘learning curve' for everyone involved.
There is no set time scale for these applications; it can prove to be a rather slow process, often taking months for a final decision.
There are no guarantees that your PCT/HB will support your case, although it seems that the agreed funding>refused funding ratio is gradually improving as more of these procedures are being done in the UK.
Note: (March 2013) - A draft publication by the NHS Commissioning Board 'Clinical Commissioning Policy Statement: Gastric Nerve Stimulation for Gastroparesis' published December 2012 states that GES will not be routinely funded for treatment of diabetic or idiopathic gastroparesis. This document has not yet been formalised as data is still being gathered from specialists in the field. A formal revised update of the NICE guidelines is expected Summer 2014.
Recommendations:
It is highly recommended that you submit a ‘personal’ letter to the PCT/HB outlining the effects GP has on your life and on your family. This will be the only opportunity for the panel to see the ‘human’ side of the application, as it is extremely rare for a patient to be allowed to attend the panel hearing. These letters are often difficult to write, as you need to share your innermost feelings and fears. If you would like us to assist you with this then we would be more than happy to do so (see email button at bottom of page).
Consider these points:
It is also recommended that you find out which secretary is dealing with the paperwork on your case at the PCT/HB, and make ‘friendly’ contact with them, and ask to be kept appraised of the hearing date and a week or so before double check that they have all the paperwork required in hand.
It is highly recommended that you submit a ‘personal’ letter to the PCT/HB outlining the effects GP has on your life and on your family. This will be the only opportunity for the panel to see the ‘human’ side of the application, as it is extremely rare for a patient to be allowed to attend the panel hearing. These letters are often difficult to write, as you need to share your innermost feelings and fears. If you would like us to assist you with this then we would be more than happy to do so (see email button at bottom of page).
Consider these points:
- Gastroparesis affects you, your partner, your children, your carer – EVERYONE potentially could gain from this procedure.
- You need to accept and put across that this procedure will NOT ‘cure’ you but could give ‘symptomatic relief’.
- The procedure although expensive, is in the long term, a far more cost effective treatment, for the NHS to fund than the alternatives ie.feeding tubes .
- This condition is extremely debilitating not just a ‘nuisance’ of a condition as some people wrongly assume.
It is also recommended that you find out which secretary is dealing with the paperwork on your case at the PCT/HB, and make ‘friendly’ contact with them, and ask to be kept appraised of the hearing date and a week or so before double check that they have all the paperwork required in hand.
Application decision:
At present it is approximately a 50/50 split on approvals/refusals for funding in the UK. If your application is turned down, appeal and appeal again – have your case referred to the convenor/ombudsman (your PCT or HB can provide their address) if you feel the PCT/HB failed to carry out procedures in making their decision correctly. Funding is usually refused for reasons quoted as the implant is “unproven”, “not statistically supported”, “in its infancy”, “not supported by the N.I.C.E guidelines”.
It is tough finding the strength to fight a bureaucratic battle when you are seriously ill, but it could be well worth the additional effort involved as many have won their cases on appeal.
Just bear in mind the cost of this procedure is far less than the costs involved long-term (see Clinical Papers page), compared with the other available treatments. It is estimated that a GP sufferer who has to be tube fed costs the NHS £15,000+ per annum – ultimately it will save the NHS money in the long term, as NHS costs for the surgery are approximately £16,000-£18,000.
At present there is no central UK database showing which PCT/HB have/have not approved funding.
Consider involving your MP or local politicians or local media, radio, newspapers etc under the heading of ‘PCT/Healthboard/Insurance Company refusing to help local citizen'. It may not endear you to your PCT/HB/Insurance Company, but may help you get your funding!
Having the surgery done privately:
If you wish to have the surgery done privately the cost is in the region of £15,000 - £20,000, dependant on length of stay, recovery etc (this does not include follow up appointments) - the implant device alone is approximately £9000.
Many Health Insurance companies in the US (including HMO's) approve this procedure after legislation was passed in the senate - so if you have a private healthcare policy you may wish to make them aware of this.
At present it is approximately a 50/50 split on approvals/refusals for funding in the UK. If your application is turned down, appeal and appeal again – have your case referred to the convenor/ombudsman (your PCT or HB can provide their address) if you feel the PCT/HB failed to carry out procedures in making their decision correctly. Funding is usually refused for reasons quoted as the implant is “unproven”, “not statistically supported”, “in its infancy”, “not supported by the N.I.C.E guidelines”.
It is tough finding the strength to fight a bureaucratic battle when you are seriously ill, but it could be well worth the additional effort involved as many have won their cases on appeal.
Just bear in mind the cost of this procedure is far less than the costs involved long-term (see Clinical Papers page), compared with the other available treatments. It is estimated that a GP sufferer who has to be tube fed costs the NHS £15,000+ per annum – ultimately it will save the NHS money in the long term, as NHS costs for the surgery are approximately £16,000-£18,000.
At present there is no central UK database showing which PCT/HB have/have not approved funding.
Consider involving your MP or local politicians or local media, radio, newspapers etc under the heading of ‘PCT/Healthboard/Insurance Company refusing to help local citizen'. It may not endear you to your PCT/HB/Insurance Company, but may help you get your funding!
Having the surgery done privately:
If you wish to have the surgery done privately the cost is in the region of £15,000 - £20,000, dependant on length of stay, recovery etc (this does not include follow up appointments) - the implant device alone is approximately £9000.
Many Health Insurance companies in the US (including HMO's) approve this procedure after legislation was passed in the senate - so if you have a private healthcare policy you may wish to make them aware of this.
‘A Useful
Checklist’:
- “Information, Information, Information” – it’s the key - you do the research, supply your clinician/GP/consultant with as much clinical/statistical data as you can to submit with the funding application – a good starting point for this is: The Manufacturers of the implant, Medtronic, who can supply you with literature and statistical data. Including the N.I.C.E guidelines– perhaps paying particular attention to the section “Due to its rarity there will never be a body of compelling evidence” - over 150 have been done in the UK, and 7400+ worldwide!
- Print off all the relevant information available from Clinical Papers page.
- Print off the information from Specialists view of GES page.
- Check the procedure that your PCT use for decision making and who is involved (can sometimes be found via internet searches, or ask your GP) – knowing the ‘key decision criteria’ may help you pitch your case more specifically!
- Ask your GP/Consultant to include you on the list of people that copies of your application documents are sent to – that way you know what has/has not been submitted and do a bit of your own quality control – and therefore possibly make ‘suggestions’ regarding information that could ‘also be submitted as part of the application’!
- Find out who is the admin/secretariat support for the decision making panel and make contact with them – they will be a good contact point for document submission, progress reports etc – try to make this person a friend not an enemy! Ensure that you keep your GP informed of anything you have submitted direct to the PCT so that they are fully aware too.
- Submit a ‘personal statement’
- And lastly – don't be deterred by the bureaucracy of it all, even though some days you are going to feel really unwell and unable to ‘fight' – tomorrow is another day, put the gloves back on and carry on the fight until you succeed.
If you need any help regarding funding please contact us using the button below