Cost of getting Botox injections if we go private.
After watching for more than 6 months my partner suffering with continuous excess salivation and the thick mucus blocking the air way leading to breathing difficulties and chocking, And, waiting for nearly six months the NHS grant applied by the Addenbrooke's MND clinic to come through, I have decided to start a crowdfunding for getting botox injection privately at least for one session until one day the grant money arrives.
Can somebody advice me how much I should aim to raise to get first round of Botox injections and consultation?
I have tried to talk to relevant people from the NHS including Addenbrookes information desk, but nobody even seems to know where I should go to get this information. We have offered to buy the injections (apparently £200-300) until the grant money come through, to get this done at the hospital, but that came to nothing either. WHAT WE DO NOT HAVE IS THE TIME! Both lower and upper motor neurons are affected by the MND she has and advanced bulbar palsy too. We waited for the summer in order to go out since this may be last year she can do that even on the wheelchair, and told the NHS people involved in her case. But nothing has happened other than prescribing some medicine which do not seem to work and waiting for the grant money to come. We cannot even go to a film since we frequently have to use the suction pump that sounds like a scooter. So far, summer has been spent in front of the TV, confined to the living room. She does not even wants to go around the neighborhood on the wheelchair because of the miserable salivation which needs roughly each 3 minutes suctions in the mornings.
When it come to terminal illness, the NHS doctrine is to maintain the quality of life. I wonder why it is not applicable here. I feel like I have to go in a fully loaded armed car to persuade our GP to make a home visit. It has been two years since my partner had been diagnosed. We had 2 home visits by the GP. Always a telephone consultation is sufficient to do the job whatever it is. It is one and a half months ago I booked a face to face consultation to discuss the situation with the Botox injections with our GP, but it won't happen until 28th of this month!
If once given, Botox stops salivation for 3-5 months (as we have found out from whom had the treatment) why not the MNDA approach the Health ministry and the NHS to get this treatment available for the MND patients without the consultant having to send a grant application for one and each MND patient and then having to wait an indefinite, unknown length of time?
Can somebody advice me how much I should aim to raise to get first round of Botox injections and consultation?
I have tried to talk to relevant people from the NHS including Addenbrookes information desk, but nobody even seems to know where I should go to get this information. We have offered to buy the injections (apparently £200-300) until the grant money come through, to get this done at the hospital, but that came to nothing either. WHAT WE DO NOT HAVE IS THE TIME! Both lower and upper motor neurons are affected by the MND she has and advanced bulbar palsy too. We waited for the summer in order to go out since this may be last year she can do that even on the wheelchair, and told the NHS people involved in her case. But nothing has happened other than prescribing some medicine which do not seem to work and waiting for the grant money to come. We cannot even go to a film since we frequently have to use the suction pump that sounds like a scooter. So far, summer has been spent in front of the TV, confined to the living room. She does not even wants to go around the neighborhood on the wheelchair because of the miserable salivation which needs roughly each 3 minutes suctions in the mornings.
When it come to terminal illness, the NHS doctrine is to maintain the quality of life. I wonder why it is not applicable here. I feel like I have to go in a fully loaded armed car to persuade our GP to make a home visit. It has been two years since my partner had been diagnosed. We had 2 home visits by the GP. Always a telephone consultation is sufficient to do the job whatever it is. It is one and a half months ago I booked a face to face consultation to discuss the situation with the Botox injections with our GP, but it won't happen until 28th of this month!
If once given, Botox stops salivation for 3-5 months (as we have found out from whom had the treatment) why not the MNDA approach the Health ministry and the NHS to get this treatment available for the MND patients without the consultant having to send a grant application for one and each MND patient and then having to wait an indefinite, unknown length of time?
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