Seizures & My Mum

[Jonnybee5735]

Hi Everyone,

back in 2002 my mother started having seizures/fits, she had 3 in a row over a 2 to 3 week period, and we pleaded with the Doctors to give her a scan and we were fobbed off every time with different excuses, since then my mother has had over 30 seizures/fits and everytime she has one she comes back to us abit more broken(she often shops breathing during a fit).

 

Last month she had a bad one, was taken to hospital and the staff thought she'd had a stroke, so they sent her to another Hospital and both refused to give her a scan, last sunday she had 4 fits in a row the last one was in hospital infront of many doctors and this one was the most violent shes had and she didn't regain conscousness, a brain surgeon was called and she wanted to operate straight away but cound'nt find the scans in her paper work, she was horrified to learn in the 8 years of having these fits she'd never been given a scan, she ordered a scan straight away and 2 tumors the size of large marbles were clear to see.

 

If my mum makes any form of recovery she will probably need constant care, which we've been told will have to be payed for by selling my parents home.

 

A head scan from BUPA costs £200, but the NHS in 8 years have refused to give her one which is why she's in such a state in the first place and now there going to take my parents home from them!!!

The 8 years trying our best to look after my mum has left me more than broke and there's no way I can afford legal help.

 

I'm at my wits end, any advice would be appreciated

Love & light John.

[loopinlouie]

Did they diagnose her with an epilepsy type illness and medicate for that?

 

I can offer no advice, I hope some will come for you, just that as an epileptic myself I am horrified that she was not scanned to rule out tumors. I know that is no help to you as in legal help, but could you ask for a copy of her medical records as a start.

 

Myself I collapsed early nineties and didnt know what was happening, was diagnosed and medicate straight away as apparantly had seizure before I couldnt remember this. I was then refered to my home hospital and scanned which ruled out I presume tumors and then they did other tests to diagnose my condition was epilepsy.

 

I just so feel for you and your mother that it wasnt found sooner, especially with you obviously regulary asking for a scan.

 

Thinking of you and your mum and hope the advice you want follows shortly xxx

[stalin's dead]

i am also an epileptic and have been on meds since early 80's but still have fits. lamictal

 

you must DEMAND a scan. dont sit back and be fobbed off. stand up and demand one!!!!!! you pay your taxes and you pay the wages of NHS staff. if they fob you off again then walk into your doctors, see him and demand one for your mum and then contact your MP as a matter of urgency. the speak to your PCT. dont take any sh*t from these people. It is your NHS not theirs!!

[loopinlouie]

I think that Jonny did all they could at the time to demand a scan. The condition is now known. Its more a case of finding out why they were let down and making sure Jonny gets the support needed for his mum. Stalin is right on that a scan was her right and they would have to explain her treatment.

 

 

 

Stalin, I stopped lamictal mixed with epilim for keppra and have at least reduced headaches but the fits still occur.

[Fuzzgin]

Contact your MP as Stalin's Dead suggested. I also agree that you should request her notes.

[easter]

This is a very tragic event for your family and clearly the delay in diagnosis should not have happened. Would it not be possible to apply for legal aid in this situation? Was there not any (mis) diagnosis from the onset of the seizures? Have you approached Patient Advice Liason Services (PALS)? My heart goes out to you as you must be traumatised by the events over the years and it is very difficult to address problems when you are worn down.

[Jonnybee5735]

Update:

We've been told its probably untreatable, prepare for the worst, were sending her home.

So myself and my farther have to be her 24/7 nursing care untill she dies.

I cant beleive it, I just cant cope anymore!

[easter]

So very sorry to hear your news. Small compensation only but you are entitled to considerable support towards caring for your mum and this should all be in place prior to her returning home.The ward staff are responsible for ensuring this is arranged.

[loopinlouie]

Sorry to hear the news. Thinking of you.

[frankieg]

This is what I would ask her doctors

1) What exactly do you mean by 'probably untreatable'. Is she treatable or not. if not why not?

2) these tumors are fairly small- are they in an area where they could be removed? If one doctor wanted to operate, what's changed?.Why is surgery no longer an option

3) If surgerys not an option what about radiation therapy?.

4)if your mother is unconcious ask her doctors:

Is it pressure from the tumors, if so have they tried drugs to relieve the pressure.

Is it because she was deprived of oxygen during her last seizures. if so has she had any tests of brain function to determine the amount of damage.

Is she on any medications that might be causing her to be non resonsive?( seditives maybe to stop seisures)

5) if shes responsive( you mention symptions of a stroke) why is she like this, will she recover, how much recovery do you expect

should she be refered to a rehab unit or hospital?

6) if the doctor thinks she's terminal

why does he say that.

how long has she got

should she be transfered to a hospice

 

Be polite but firm, ask to talk to all the specialists on her case,- at least the neuroligist and neuro surgeon. To everything they say ask 'why is she like that ? ' why do you say/think that?' and' what can you do about it?' And take a notebook with you and write down what they sa . refere frequently to the the mismangement of the last 8 years and that some people have told you that it could possiably, just possiably be regarded as medicial negligence . Reasure them that you dont believe that of course, but it might be a good idea if someone else could review the case. Or does the doctor think she would benefit by being transfered to a specialist hospital?. Contact PALS and the hospital complaints department, explain the situation and mention negligence loudly and frequently. Oh and go to the CAB and they will either provide or advise you about legal aid and make sure that the people you are dealing with know you have a lawyer. You havent said how old your mum is. If shes elderly the doctors will try not to treat her. But age isnt a factor. My dads 87 years old and in the last 3 months- due to hospital neglence has had a bowel resection pnemonia and, a wound thats taken 13 weeks to heal. three months later he had another resection followed by two heart attacks, a colapsed lung and hes been resusitated twice- and hes comming home next week!!! Above all most take care of your own health, you getting sick isnt going to help anyone.

[loopinlouie]

frankieg, a very helpful post, good questions to ask

[frankieg]

thank you- I'm afraid it was a bit long, but what this family is going through made me so angry that once I started my reply I couldn't stop!!! I've seen a lot of negligence in my nursing career but this is one of the worse stories I've ever heard. And no one will take responsibility untill and this family make a big loud complaint. on friday i contacted the hospital legal department. In the USA, where I worked for many years, it was quite common for patients and families to 'bypass ' the complaints procedure and contact the hospital lawyers directly . My arguement is that it was the Trusts policies and lack back up procedures that were directly to blaim for what happened to dad. Cant wait for their response.

[Sali]

If you follow the formal complaints system you will be waiting months for a response. If you escalate your complaint to the Ombudsman, you will wait a further six months plus just to see if your complaint will be fully investigated.

 

Your stories regarding poor care for the elderly resonate with me. A relative of mine was also epileptic and had accompanying bowel issues. The hospital and social services were preparing to discharge her home with a few hours of care a day. I refused to allow her discharge, wrote to my MP, the DoH, Social Services Director. Everyone I could think of. I got 24-hour care at home. I wasn't impressed by this service, which appears to be staffed by people without any training who arrive straight off the plane from Eastern Europe. Language and cultural differences were also an issue. How they manage to CRB these people, I have no idea. I caught one of the staff stealing. However, worse than this, my relative fell and cut her head whilst under their care.

 

I also found out about direct payments, which allows your relative to employ somebody to care for them. This could be a relative. Although my local authority declared themselves (in a letter to my MP) to be the flagship for this service, their staff were ill-informed.

 

I am left with absolutely no faith in the people who are supposed to be managing the NHS and Social Services. The system is a complete failure.

[frankieg]

When/if dad comes home again he's going to 24/7 hour care, for which I get the weekly grand payment of £53 carers allowance, which is taxable .

Sali-this direct payment, he wont get it will he because he gets attendence allowance? And you sound as if you have tried the complaints procedure, did you get anywhere.?

[Sali]

Obviously I do not know of your dad's financial status. However, my relative owned their own property and had limited savings. I had to fight really hard to get them 24/7 care paid for by social services. I contacted the DoH for advice. Initially they would only offer 2-4 hours a day. As I said I wrote to my MP and many others. I got the feeling that Trusts and social services do not like people making a fuss and having the spotlight turned on their incompetence. I applied and got attendance allowance at the top rate for my relative as well as the 24 hour care. I also applied and received a blue badge and found out about the free wheelchair service too which needs GP referral.

 

My advice would be to challenge any decision you are not happy with and do your own research. Don't expect good or accurate advice from social services or the discharge team at the hospital. At a pre-discharge meeting with social services/doctors/nursing staff/physios I was told categorically that I would not be able to get my relative 24 hour care due to costs and 'the system' (their words). I remain bitter that in the midst of the stress of dealing with a loved ones illness they made life so much harder.

 

I dread to think what happens to those with no advocate.

[Jonnybee5735]

Hi everyone, I'd like to say thanks for the advice and the kind words, we've been told there isn't much hope and after waiting 10 days for a MRI scan she's finnally had one but we have to wait a week for the results(go figure).

From what I can see the system itself is to blame and been created by design to be this way, all the nurseing staff are fantastic and do a great job but managers + upwards down't manage the people they manage the money.

The NHS is a LTD company, a profit making limited company the same as the BBC, CSA, The Police & The Courts, my research can prove it and many of them have unsatisfied CCJ's against them check them out here( www.tpuc.org | News for positive people ).

 

This country has gone to the wall!!!

As for fighting the system to get some sort of justice for my mother, well I'm not going to hold my breath, there's no such thing as justice, the game's fixed.

I smiled at one manager and said "You've got private health care haven't you,thats why you don't give a sh|t", you should have seen her face.

 

Again Thanks everyone, and don't give up the fight for whats right!

 

John.

[Sali]

Jonnybee. I know this is a very stressful time and I wish you well.

 

I quite agree with what you say about this country.

 

Growing up and hearing of horrific stories from other countries, I always thought that it couldn't possibly happen here. We have standards. Our systems are robust. We have access to justice and our laws are fair.

 

Yet that is just a flimsy facade. Behind is confusion, chaos and incompetence. Sadly it is only in the midst of a crisis that we realise this and are too overwhelmed to deal with the situation effectively.

 

I'm sure lots of people who have gone through such trauma have tried to change the system for the next lot, but it's like the circumlocution office in Dickens' Little Dorrit: Every fly is crushed on a wheel.

 

Hang on to your hope.

[frankieg]

jonnybee I'm so sorry about your mum. It must be so difficult knowing that if she'd had that scan years ago this wouldnt have happened. People decry the 'sue happy' culture in the USA, but the fear of being sued makes sure things like this doesen't happen. What can the ordinary people do? The system pushes you from pillow to post and you're blocked from all sides. the site you mentioned is great thanks for taking time to post it. Thinking of you and I have everything crossed that maybe , just maybe the scan is hopeful of some sort of recovery.