I am near to having an IRP for my parent with AD2, who does not meet the NHS funding criteria.
It has taken me many years to get to this stage, after writing letter after letter. The PCT not responding to our concerns and how they made their decision, are just one of the issues to be discussed. My parent lived on their own, after their partner passed away. My parent had some daily social service care, but eventually they had to go into a care home, using initial respite.
The system is run by NHS paid staff ( even the Panel), so the promise on an IRP is not strictly true. They are paid by the NHS to save money, and they have a lot to lose in this case.
Keys features (apologies for no correct ordering):-
1. This society did not help in my pursuit. It may have sent out leaflets to me, but when it came to the actual nitty gritty, who’s right who’s wrong, then I was on my own.
2. The NHS system works by knowing you are a layman, and by taking advantage of your lack of knowledge and how the system works
3. AD /AD2 is an “unpredictable terminal condition”. According to the streetwise publication “The Care Charge AVOIDANCE Handbook” 2nd edition page 22; If you suffer from some form of condition eg Alzheimer’s or dementia which would enable full funding to be obtained. Note. I have contacted this society on this very detail, and they are not at liberty to pass judgment on publications. It is up to you to decide. I’m not pushing this publication; I’m just letting you that it is out there to read and assess.
4. Get an EPA on your parent – it takes time but it’s worth it. Their GP has to sign it. You then control the purse strings. Stop the Care home funding until you are satisfied with what is going on. You may be able to perform an equity transfer of the property by going to the Court Of Protection- You have to fill out loads of forms though. Once you get permission, you can instruct a solicitor to perform a TR1 form transfer of equity to the children at the Land Registry ( assuming you have access to their WILL and it states that the children will receive the estate on their death. ) An EPA gives you the right to look after the best interests of the client.
5. If you get your loved one, sectioned then all funding will be given, as under section act 117. We were advised that this was possible but it never happened. Our parent went into the care home for respite, stayed in. Then we get a letter one day, saying that our parent has been assessed and does not qualify for NHS funding. They did not look at all the medical facts. They did not have the GP medical records to assess the patient. The taking of funds without due process is called fraud. They decided to take money from our parent’s bank account without correctly following procedure.
6. If my parent had a fall at home, and had to go to hospital for a few weeks, with say a broken log, then the nurses would have soon noted that the patient was not “quite right”. They would have to be assessed for release back home. If they then knew the patient had dementia then they may have to be considered for mental sectioning for their own safety.
7. Care funding should be agreed and sorted BEFORE the patient goes into the home. This is proper procedure; otherwise they are abusing the care system. You need to challenge it BEFORE hand.
8. The GP and social services did not advise of the section act 117 and how to peruse this. If they did then the NHS would lose a fortune. I am going to purse this matter at the IRP as to why this was withheld from the family. Once sectioned, you will then have to fight ( I assume) to put your loved one into a care home. Given that most homes, now look after AD patients then this could be described as standard practice, and used as an argument.
9. A Care home EMI ward is in fact a form of sectioning – behind closed doors for the safety of the patient requiring (24x7 constant care) or even a danger to the public if they are left out. My parent would cross a main road, totally oblivious to the danger, putting drivers at risk. Climbing out of windows at night etc.
10. During disputes of funding do the following:- Cancel the Direct debit from the patient’s account. You have every right to do this until an IRP etc is completed. In the meantime, the patient WILL NOT suffer any degradation of care. The patient’s care and wellbeing is paramount. The funding is to the local council. That is the paying relationship. The council pay the care home. The patient does not have a payment relationship with the care home, so don’t feel guilty. Once you have done this, then the PCT etc are under great pressure to resolve the dispute – TO YOUR SATISFACTION. As long as you keep paying, the PCT will ignore you.
11. Discrimination – If a patient has a terminal condition of say the liver or kidney, then they can make appropriate financial arrangements for their estate, WILL or even plan to release some of their equity from their property for a bit of life’s luxuries, they may have never had. Even gift their grandchildren etc. All this is denied from a dementia patient. They haven’t the capability to rewrite their WILL or manager their estate once this sets in. Taken property from these vulnerable people is discrimination. But this needs to be put in front of a judge and then a decision made. The NHS don’t want this and other
12. Legal point of property – Do not sign any papers to hand over the property – Until all funding is resolved then it stays with the patient. How can a property be owned by the NHS as debt?
13. Confiscation of property - Either the NHS own the property or they don’t. There is no ½ way house. The children( me being one) are left to manage the property and for what ? So the NHS can take it away. If it is rightfully there’s to take, then why don’t they insure the property and manage it whilst the patient is in the care home? They want their cake and eat it. This point has not been legally challenged. This is the problem at the moment – until the a decision is taken to a high court judge, and the NHS challenged , then no president can be set.
14. Care for property – There seems to be a misconception that if you stop paying fees or you do not handover their property for care home fees than the patient care will suffer. As mentioned, the Care of the patient is paramount, through out disputes of payment.This is your only weapon for justice. So the argument is that the patient will pass away with the same level of care irrespective of their financial status. Some of the care home friends of my parent, have no assets, yet get the same level of care.
15. Morally wrong - My parents made sure we had a home over our heads. The home was paid off decades ago, and they were proud to have do debt to society. Yet the present Care system to take property and then say there may not be enough funds to cover their care home costs, is morally wrong – knowing they will go to their grave in debt to society, is morally wrong, and should be challenged.
It has taken me many years to get to this stage, after writing letter after letter. The PCT not responding to our concerns and how they made their decision, are just one of the issues to be discussed. My parent lived on their own, after their partner passed away. My parent had some daily social service care, but eventually they had to go into a care home, using initial respite.
The system is run by NHS paid staff ( even the Panel), so the promise on an IRP is not strictly true. They are paid by the NHS to save money, and they have a lot to lose in this case.
Keys features (apologies for no correct ordering):-
1. This society did not help in my pursuit. It may have sent out leaflets to me, but when it came to the actual nitty gritty, who’s right who’s wrong, then I was on my own.
2. The NHS system works by knowing you are a layman, and by taking advantage of your lack of knowledge and how the system works
3. AD /AD2 is an “unpredictable terminal condition”. According to the streetwise publication “The Care Charge AVOIDANCE Handbook” 2nd edition page 22; If you suffer from some form of condition eg Alzheimer’s or dementia which would enable full funding to be obtained. Note. I have contacted this society on this very detail, and they are not at liberty to pass judgment on publications. It is up to you to decide. I’m not pushing this publication; I’m just letting you that it is out there to read and assess.
4. Get an EPA on your parent – it takes time but it’s worth it. Their GP has to sign it. You then control the purse strings. Stop the Care home funding until you are satisfied with what is going on. You may be able to perform an equity transfer of the property by going to the Court Of Protection- You have to fill out loads of forms though. Once you get permission, you can instruct a solicitor to perform a TR1 form transfer of equity to the children at the Land Registry ( assuming you have access to their WILL and it states that the children will receive the estate on their death. ) An EPA gives you the right to look after the best interests of the client.
5. If you get your loved one, sectioned then all funding will be given, as under section act 117. We were advised that this was possible but it never happened. Our parent went into the care home for respite, stayed in. Then we get a letter one day, saying that our parent has been assessed and does not qualify for NHS funding. They did not look at all the medical facts. They did not have the GP medical records to assess the patient. The taking of funds without due process is called fraud. They decided to take money from our parent’s bank account without correctly following procedure.
6. If my parent had a fall at home, and had to go to hospital for a few weeks, with say a broken log, then the nurses would have soon noted that the patient was not “quite right”. They would have to be assessed for release back home. If they then knew the patient had dementia then they may have to be considered for mental sectioning for their own safety.
7. Care funding should be agreed and sorted BEFORE the patient goes into the home. This is proper procedure; otherwise they are abusing the care system. You need to challenge it BEFORE hand.
8. The GP and social services did not advise of the section act 117 and how to peruse this. If they did then the NHS would lose a fortune. I am going to purse this matter at the IRP as to why this was withheld from the family. Once sectioned, you will then have to fight ( I assume) to put your loved one into a care home. Given that most homes, now look after AD patients then this could be described as standard practice, and used as an argument.
9. A Care home EMI ward is in fact a form of sectioning – behind closed doors for the safety of the patient requiring (24x7 constant care) or even a danger to the public if they are left out. My parent would cross a main road, totally oblivious to the danger, putting drivers at risk. Climbing out of windows at night etc.
10. During disputes of funding do the following:- Cancel the Direct debit from the patient’s account. You have every right to do this until an IRP etc is completed. In the meantime, the patient WILL NOT suffer any degradation of care. The patient’s care and wellbeing is paramount. The funding is to the local council. That is the paying relationship. The council pay the care home. The patient does not have a payment relationship with the care home, so don’t feel guilty. Once you have done this, then the PCT etc are under great pressure to resolve the dispute – TO YOUR SATISFACTION. As long as you keep paying, the PCT will ignore you.
11. Discrimination – If a patient has a terminal condition of say the liver or kidney, then they can make appropriate financial arrangements for their estate, WILL or even plan to release some of their equity from their property for a bit of life’s luxuries, they may have never had. Even gift their grandchildren etc. All this is denied from a dementia patient. They haven’t the capability to rewrite their WILL or manager their estate once this sets in. Taken property from these vulnerable people is discrimination. But this needs to be put in front of a judge and then a decision made. The NHS don’t want this and other
12. Legal point of property – Do not sign any papers to hand over the property – Until all funding is resolved then it stays with the patient. How can a property be owned by the NHS as debt?
13. Confiscation of property - Either the NHS own the property or they don’t. There is no ½ way house. The children( me being one) are left to manage the property and for what ? So the NHS can take it away. If it is rightfully there’s to take, then why don’t they insure the property and manage it whilst the patient is in the care home? They want their cake and eat it. This point has not been legally challenged. This is the problem at the moment – until the a decision is taken to a high court judge, and the NHS challenged , then no president can be set.
14. Care for property – There seems to be a misconception that if you stop paying fees or you do not handover their property for care home fees than the patient care will suffer. As mentioned, the Care of the patient is paramount, through out disputes of payment.This is your only weapon for justice. So the argument is that the patient will pass away with the same level of care irrespective of their financial status. Some of the care home friends of my parent, have no assets, yet get the same level of care.
15. Morally wrong - My parents made sure we had a home over our heads. The home was paid off decades ago, and they were proud to have do debt to society. Yet the present Care system to take property and then say there may not be enough funds to cover their care home costs, is morally wrong – knowing they will go to their grave in debt to society, is morally wrong, and should be challenged.
