Hi cheshirecat,
Hope everything is okay with your Mother and yourself.I noticed that you had directed Amin to this and other sections concerning feedback on the issue of fully funded continuing healthcare.That was probably better than trying to run through everything again.I don't know if they have review periods but my Mother is still presently fully funded.
Well done for the effort you are putting in,having to fight for what should be there in place for your Mother and family.It would be nice to think that things may change.Lets keep our fingers crossed,you never know,but with a government steamrollering its way forward in an attempt to claw back the debt nothing would surprise me.We are all just figures on paper to them.
keep on fighting
All the best
Titan
Hi Titan, I have now been to the House of Commons, attending the Parkinsons Fair Care Campaign. I met up with my M.P. and also spoke to the care Minister, Paul Burstow about my situation with continuing care.
This is now gathering momentum and the campaigns team are also backing me and others in the same situation. What would be good is a complete review of how the legislation is working and all the issues surrounding it, which have been a complete nightmare for a lot of families, causing distress and a feeling of injustice amongst relatives.
Patients are told their social care outweighs their medical needs, when in actual fact they are within the criteria for medical needs, as has been evident by the number of appeals won, but to the detriment of their representatives health, who are often worn down by the appeals process.
It is usually court cases that highlight this injustice, and then the PCT's end up paying court costs, wasting even more money!
This is now gathering momentum and the campaigns team are also backing me and others in the same situation. What would be good is a complete review of how the legislation is working and all the issues surrounding it, which have been a complete nightmare for a lot of families, causing distress and a feeling of injustice amongst relatives.
Patients are told their social care outweighs their medical needs, when in actual fact they are within the criteria for medical needs, as has been evident by the number of appeals won, but to the detriment of their representatives health, who are often worn down by the appeals process.
It is usually court cases that highlight this injustice, and then the PCT's end up paying court costs, wasting even more money!
I have just read some of the correspondence on the subject of continuing care with growing dismay. My husband is at present in hospital awaiting transfer to a nursing home. This followed from a fall which resulted in a broken head of femur. Complications followed resulting in the necessity for a supra-pubic catheter. He has developed a degree of confusion and so after many years of caring I decided I could no longer continue to care for him.
He was assessed to see if he qualified for continuing health care. I was told by the social worker that he didn't qualify but I have not been told what the criteria were and it seems I am expected to accept this without question.
What I want to know is how do I get to see the kind of questions asked and the report on my husband?
As your correspondents point out this is very important to the families of the persons concerned yet it appears that we are the last people to be informed in any detail.
He was assessed to see if he qualified for continuing health care. I was told by the social worker that he didn't qualify but I have not been told what the criteria were and it seems I am expected to accept this without question.
What I want to know is how do I get to see the kind of questions asked and the report on my husband?
As your correspondents point out this is very important to the families of the persons concerned yet it appears that we are the last people to be informed in any detail.
Hi Dot, ring the Parkinsons helpline and ask to speak to one of the advisors dealing with social care, they have been very helpful.
If you want a copy of the continuing healthcare criteria, ring Age UK in your area. Mine were absolutely brilliant. The helpline or Age UK will hopefully advise you on how to obtain a copy of your husbands assessment.
You also have a right to appeal. I got an advocacy service to help me, or you could consult a solicitor if you need power of attorney.
THIS SITUATION IS HAPPENING TO PATIENTS ALL OVER THE COUNTRY.
Lastly, please get in touch with Donna O'Brien from the Parkinsons Campaigns team. Her contact details are on the forum under the consultation section, headed continuing care.
If you want a copy of the continuing healthcare criteria, ring Age UK in your area. Mine were absolutely brilliant. The helpline or Age UK will hopefully advise you on how to obtain a copy of your husbands assessment.
You also have a right to appeal. I got an advocacy service to help me, or you could consult a solicitor if you need power of attorney.
THIS SITUATION IS HAPPENING TO PATIENTS ALL OVER THE COUNTRY.
Lastly, please get in touch with Donna O'Brien from the Parkinsons Campaigns team. Her contact details are on the forum under the consultation section, headed continuing care.
Just realised it is a year since I first brought up the subject of continuing care.Since then I have been to the House of Commons and spoken to the care minister, lobbied with the Parkinsons campaigns team, written numerous emails to groups such as the Kings Fund and liased with representatives from Age UK and other voluntary groups to raise awareness of this issue and all the distress it causes for patients and families.
Those patients with end stage Parkinsons,who have high needs and pay high costs in nursing homes are a group who are disadvantaged by the present system and its uncompromising assessments.
Please contact the Parkinsons campaigns team under the consultation section if you have been affected by either having continuing care refused or withdrawn for yourself or family member, as we need to put these issues to the Government as it gathers information for its commission on funding care and support in the future.
Those patients with end stage Parkinsons,who have high needs and pay high costs in nursing homes are a group who are disadvantaged by the present system and its uncompromising assessments.
Please contact the Parkinsons campaigns team under the consultation section if you have been affected by either having continuing care refused or withdrawn for yourself or family member, as we need to put these issues to the Government as it gathers information for its commission on funding care and support in the future.
I have steered clear of this topic, for personal reasons. My late mother's continuing care (she did not have PD) came & went. it was stressful to go though the reviews & at one it seemed only my sister's heart attack & my PD dx swayed the decision It did not help in the long run. as continuing care was not in place when my mother died. I now find myself in the position of having to contemplate a care home for me. I have no idea how it will be funded. Cheshirecat, I salute your energy & dedication
Hi Annebenadette, and anybody else contemplating how to fund your future care home fees, please look at the consultation section of this forum and you will see the campaigns team have included a consultation about views on social care funding. There is an email address you can write to which is the contact for the Dilnot commission and you can give your experiences of continuing care and how the past system has or has not worked in your case.The deadline is 28th January.
You can also write to your M.P.as I did and get them to put questions on continuing healthcare to Parliament.
Thanks for your support in advance. I want other parkinsons patients to know that nothing will change unless we get involved. I have done this, even with a life threatening illness, so I hope others will be inspired to carry on and fight for what they think is right.
You can also write to your M.P.as I did and get them to put questions on continuing healthcare to Parliament.
Thanks for your support in advance. I want other parkinsons patients to know that nothing will change unless we get involved. I have done this, even with a life threatening illness, so I hope others will be inspired to carry on and fight for what they think is right.
Just a quick update on where I am up to with my continuing health care appeal for mum. My advocate and I were about to go to the Strategic Health Authority, we have an appointment booked for a panel meeting. Suddenly got a phone call out of the blue asking for another look at mums case from the local PCT, after the head of clinical mangement looked over her files again, and we had a meeting with her.
I am now waiting to hear the outcome.
The sad thing is that mum is now seroiusly ill in hospital.
I want to know why some assessors will not listen to consultants/doctors/next of kin advice and take it upon themselves to make decisions that can be detrimental to the patient.
If a relative is being told that the patient's needs are only personal care and the assessor ignores the multitude of complexities that go with parkinsons, could that relative mistakenly remove their mother/father/offspring from essential nursing care and put them in a residential home to save costs? Just a thought!
The campaigns team have already said that continuing care can be a postcode lottery.
Will keep you updated.
I am now waiting to hear the outcome.
The sad thing is that mum is now seroiusly ill in hospital.
I want to know why some assessors will not listen to consultants/doctors/next of kin advice and take it upon themselves to make decisions that can be detrimental to the patient.
If a relative is being told that the patient's needs are only personal care and the assessor ignores the multitude of complexities that go with parkinsons, could that relative mistakenly remove their mother/father/offspring from essential nursing care and put them in a residential home to save costs? Just a thought!
The campaigns team have already said that continuing care can be a postcode lottery.
Will keep you updated.
Hi Cheshirecat,
You still fight on bravely,you are a good Daughter.Not so much a lottery as a process designed to make it such that only those extremely debilitated get the fully funded care.
As for my Mother,she has also had her fully funded care stopped.I sat in on the process as the questions were ticked off according to which aptly describe my Mothers condition.The questions are written in such a way as to leave open a very grey area between each,an overlap.Of course,i was pushing towards the higher need each time.However this was generally brought down,because of this overlap.
It was quite frustrating and the end result was,the fully funded element was taken away and My Mothers case was means tested.My Dad is okay with it.In fact the money taken for the care mainly consists of my Mums pension and such anyway.
Hope you win your fight,
All the best
Titan
You still fight on bravely,you are a good Daughter.Not so much a lottery as a process designed to make it such that only those extremely debilitated get the fully funded care.
As for my Mother,she has also had her fully funded care stopped.I sat in on the process as the questions were ticked off according to which aptly describe my Mothers condition.The questions are written in such a way as to leave open a very grey area between each,an overlap.Of course,i was pushing towards the higher need each time.However this was generally brought down,because of this overlap.
It was quite frustrating and the end result was,the fully funded element was taken away and My Mothers case was means tested.My Dad is okay with it.In fact the money taken for the care mainly consists of my Mums pension and such anyway.
Hope you win your fight,
All the best
Titan
Hi Care TBD and welcome.
I was very interested to read your post. My husband has Parkinsons and dementia and was granted continuing health care when he was admitted to a nursing home last July. His needs are complex and I have been told it would be impossible for me to care for him at home. I am expecting a reassessment at any time and if this does result in him losing the CHC I will be back to you for advice!
Worrals
I was very interested to read your post. My husband has Parkinsons and dementia and was granted continuing health care when he was admitted to a nursing home last July. His needs are complex and I have been told it would be impossible for me to care for him at home. I am expecting a reassessment at any time and if this does result in him losing the CHC I will be back to you for advice!
Worrals