London HIV clinics are about to embark on a new approach to prescribing Antiretroviral drugs (ARV’s) that will last for at least two years
The government has given NHS managers the job of saving a lot of money, fast! So they are doing what they can to comply, this process is euphemistically called making ‘efficiency savings’ but can more accurately be described, in practice, as ‘cuts’.
The London Specialised Commissioning Group (SCG) commissions HIV care and treatment for London hospitals. It recently undertook a tendering process aimed at saving money by using less expensive but clinically appropriate drug options for patients accessing treatment in London, The objective being to treat more HIV patients within limited resources. For more information go to www.londonspecialisedcommissioning.nhs.uk
At a time of Government cuts in the NHS budget, I don’t object to saving money so more people with HIV can be treated but doing so does have implications for patient choice.
There are certainly lessons to be learned from the way in which the process was undertaken i.e. the lack of any meaningful consultation with patients about what was going on. Effective public patient engagement is not always easy, consultation takes time and can mean people object to any proposals made, time constraints and the legal constraints relating to the tendering process are also important considerations.
Still, now it’s a done deal we have to live with it. The new arrangements will certainly have an impact on the choices people who start treatment in future can make about which drugs they are able to take.
It may also affect those currently on treatment, they may be asked to change drugs but this should only happen where it is clinically appropriate.
Essentially, no matter which clinic you go to in London, in future you and your consultant will choose from the new ‘set menu’ of drugs available.
Soon a short and long version ‘Patient Information Leaflet’ will be available in your clinic telling you about the changes in more detail, a draft version is already available in some clinics.
It is important to understand that the new prescribing rules only apply where it is ‘clinically appropriate’. This means any drug combination you are asked to take has to work for you, not only against your personal strain of HIV, but you also have to be able to take it, as prescribed, and deal with the side effects.
Your Consultant is a Doctor whose first duty under the Hippocratic Oath is to ‘do no harm’; he/she should never ask you to take something you cannot manage to adhere to or which is making you feel ill simply because a more suitable drug is more expensive and is not available on the new ‘set menu’. So, while you may find that cost of treatment is discussed with you it should not be the deciding factor in what drugs you are prescribed.
Remember, Doctors prescribe the pills but we are the ones taking them, you can say NO’ to a particular drug or combination of drugs, but this doesn’t mean you should stop taking your ARV’s, you just need the ones that are right for you.
Doctors are not mind readers, they are also very busy and you may not see them as often as you used to, especially if you are defined as a ‘stable’ patient. So, if you feel that the drugs you are asked to take are not suitable for you, because of side effects, because you cannot manage adherence issues or for any other reason, then you need to discuss this with your Consultant. If you find this difficult, then take along a friend, partner or someone who can help you make your views known.
Your Consultant will be aware of the new prescribing guidelines and the issues they raise and will have a professional interest in how they are affecting the patients under their care. The better your relationship with your Consultant and the more honest you are with them about any concerns you have the better for you, for them and for everyone else.
If you feel that your Consultant is not taking your concerns seriously, you have the right to change Consultant or even Clinic. If it comes down to a choice between changing clinics to find a more supportive Consultant or stopping your medication, then there is no contest: change Clinics, do not stop taking your medication.
If you have something to say about the process by which all this came about, then tell your Consultant. Write to the London Specialised Commissioning Group (SCG), their contact details are available on their website, and raise the matter at the Patient forum in your clinic if there is one.
You can also choose to attend the Public and Patient Engagement sub group of the SCG and ask questions; again further details are available from their website. You can raise the matter with the NAT (National Aids Trust) and let them know this is an issue is something they should get involved with. If what happens in London is considered a success, it could be rolled out elsewhere.
The Government’s rhetoric repeatedly stresses ‘Patient Choice’ and ‘no decisions about us without us’, well ‘Choice’ at least in terms of drugs has just been restricted and that decision had indeed, been made without us….this time.
The Government has announced a ‘pause’ in the Healthcare reforms to ‘listen’ so, you could write to your MP to let them know what is happening and what you think should happen, both now and in the future, to the services you rely on.
Perhaps you want to bring this or any other matter to the attention of those MP’s and Peers who are particularly interested in matters relating to HIV/AIDS, e.g. the impact ‘Welfare Reform’, you can do so via the All Party Parliamentary Group on HIV/AIDS, their web site is at www.appghivaids.org.uk