Unhelpful GP

[Northwesternercas]

I am new here but am hoping someone can advise me. My Mum is 89. Until Jan she lived fairly independently with me for support. Her memory was failing but otherwise in good health and hadn’t seen a GP for 5yrs. In Jan this year she developed a twisted bowel, now has a stoma. At the same time she had a stroke, lost the ability to swallow and now has a PEG, and is fed directly into her stomach via a pump which operates 10 hrs a day. She is effectively confined to a chair with access to a commode for all that time. The stroke has made her memory worse, caused dyspraxia and confusion. However, this is not immediately obvious. A ten minute conversation with the GP, when she assured him she was fine, would not have raised suspicions. She can remember most things for 10mins, but after 30mins it has all gone. The neuro therapists and the District nurses have all raised concerns about her mental state - but only after they had seen her often enough for the issue to reveal itself. They have all contacted the GP with their concerns but he still says, from what he saw on his one visit, that she is not impaired.

I spend all morning and half the afternoon with her, every day. If I don’t she forgets she needs to stay connected to the food pump and tries to walk off, disconnecting it. She needs a walking frame but forgets to take it with her, and there are countless other safety issues, and the inability to change her own stoma bag. We have carers to help her wash and dress in the morning (I do the school runs some mornings and afternoons) and another carer at night. The DNS call in twice a day. I spend about 42 hours a week with my mum, doing the shopping cleaning etc, in addition to safeguarding. We need to claim attendance allowance but won’t get anywhere without GP support. I love my Mum and want to help, and I love my granddaughters and can’t/ won’t reduce what I do for them, but unless we can get this allowance we will have to cancel the careers and I will have to be there first thing in the morning until she goes to bed, which is not possible. I am at my wits end on how to get her GP to see the real issues. I think he feels we are just being greedy and trying to claim something Mum does not really qualify for. How can I get the him to understand that not all memory issues are caused by Alzheimer’s - which was the test he gave her. All advice gratefully received.

[honjen43]

The fact that your mum has not seen a GP in 5 years shows me that the current GP may have little idea of who she is and may be basing his opinion on earlier notes.

You should be able to get a second opinion, and you sound like you need to consult with a geriatrician or neurologist who may have a better understanding of her needs and mental state.

So, go back to the specialist she had after the stroke, and the specialist who decided she needs a PEG. Sounds like they need to reassess her state of health and mind, and guess their decision would gazump that of the GP.

It may mean she could require care in an elder care home, so you may need to think about the implications and broach it to her. In my opinion, she may be better cared for under your roof than in a care facility, unless you can find a good one nearby. Such care would probably require to restrict her movement around that place.

If all this has to begin with a referral from said GP, then look for ways to make a complaint higher up.

I live in New Zealand so don't know how other systems work!

However exhausting it is, you are your mum's advocate and must speak out on her behalf, even if she disagrees because she is impaired! It boils down to keeping her safe, and you staying sane and having a life!

Take care!

Hugs

Jen xxx

[sassy59]

It’s not good that your mums GP is being so difficult and I would seek a 2nd opinion. You should be able to claim attendance allowance and have good care for mum in her own home for now at least. It sounds as if mums care needs will increase over time so I wish you well with getting things sorted as you need a life too.

I hope you get some more replies and advice soon and welcome to the forum. Xxxxxxx

[Hidden]

Hi Northwesternercas,

First of all as a newcomer to our group, I'd like to offer you a very warm welcome and I hope that you'll get some advice which will be of help.

On the face of it, your struggle with your mum's GP is similar to an issue we faced with my own sister in the early days of her dementia. She presented with paranoia, not memory loss, and passed initial tests with flying colours. My sister saw her GP as malevolent and became cunning at hiding her symptoms, insisting she was fine. It took a bad fall and spell in hospital before the truth was revealed.

I'm not all that clear from what you've said whether mum has not seen her own GP or any GP for the last 5 years, but either way it doesn't sound that satisfactory. It would appear that her ongoing physical problems are being ignored in assessing her for Attendance Allowance.

The first thing is that you need a different GP opinion. You can do this easily by asking for an appointment with someone else at her Practice, or by taking your concerns to the Practice Manager.

I've had an ongoing mystery heart condition and have seen 7 or 8 different locums, and can testify that whilst all were competent, there's been no one common opinion or diagnosis.

Also, don't be afraid to be tough with whoever you do see, whether that's her current GP or any other. We are sometimes conditioned to just accept whatever a GP says. Don't! Speak up.

It's quite unusual for a GP to be judgmental about your circumstances, so I think it's fairly unlikely that's the actual cause of his reluctance to take this forward for you. It's probably just a lack of insight into your daily problems with your mum.

Others in our group may be able to help you further, and please do come back and tell us how you get on with this. Once again, a very warm welcome to our group.

[katieoxo60]

Sorry to hear you are not getting the help you need with your mum, although a doctors report is better for attendance allowance , other professionals including carers can confirm your mums need for assistance. Do you have a local stroke victim support group or local carers group who could advise you, ask the council to assess your needs as a carer which can often change the situation . Discuss this matter with your GP who can often help to esculate a different veiw from your mums GP. Age UK help with form filling for attendance allowance. If your mums mental capacity is impaired then help she is entitled to could be different. You do need to complain but that only adds to the already unacceptable situation, maybe contact Pals or Healthwatch or what ever patients advocacy service is available in your area. Complaints about Gps service have to go to your mums practice manager first and they are not allowed to penalise you for complaining. Your mum of course as the right to refuse treatment as a patient unless it's proven she is not able to make such a decision. Fill in the form for benefits now and worry about supporting evidence later or you may not get back dated payments if it is granted. I wish I could do it for you to ease the burden, but alas we can only give on line advice and support. Wish the system was easier Oh and your mum should be seen more frequently as she is of mature years. One last thing you do not need to prove your mums illnesses only show that it is reasonable to expect she would need help with daily personal tasks given her age and health status, she does not need to have the help to claim the money. Hope this does not sound pushy , only trying to show you the way. Take care and understand your concerns . It is you who needs support to help your mum and I feel for you . Best wishes to you bothxx

[Northwesternercas]

Thank you for all your advice. I am heartened that you would take the time to respond to my post. That alone has helped. I will go and tackle Mum’s GP again as soon as I can get an appointment. And I will take time to read through all your comments again this week.