Does anybody know at what stage Neuropsychiatry Assessment and Treatment is declined? I am about 40 years post TBI with Community Mental Health unable to even appropriately assess me due to lack of understanding and expertise in 'Neuro' issues like Cognitive Impairment, and Communication. Neuropsychiatry declined two referrals as I am too far post injury! To me this is discrimination, ageism, false economy and damaging to my Mental and Physical Health. It has been suggested to me that this is breach of Human Rights. I have constantly worked hard at managing the effects of my Injury and maintaining a valuable contribution to Society. I am now binned by Mental Health Services and find that I don't fit in a box or have a label to deserve treatment, support or care. Hopeless and out of energy to fight anymore.
Post Injury Neuropsychiatry Cut Off?: Does anybody... - Headway
Post Injury Neuropsychiatry Cut Off?
Hi Debbie. Can you tell us more about your difficulties as it's unclear whether you're struggling with the long-term effects of brain injury or whether the problem is depression/anxiety (or maybe even benefits) related......or a combination of these ?
As to any cut-off timescale for assessments, maybe you'd get the most accurate information by phoning the Headway helpline on 0808 800 2244 (freephone - office hours). Regards, Cat..
Hi Cat, sorry I thought I replied to you days ago. I was a fit healthy 20 year old when I had my TBI. In 1980 they didn't realise the potential life long challenges following a serious Brain Injury. My parents were told by the Neurosurgeon that they wouldn't notice the difference in 18 months time. The depression set in about 3 months after my accident. So Neurological Impairments and mental health were complicating each other without me being on a Rehab plan. After 18 months I was back at full-time work. Then made redundant and retrained to work in a Building Society and was subject to two Armed Robberies, PTSD added to the mix and finally 23 years ago I was raped by my husband. Although in those days it was allowed because I was his wife. More complications. I am ok with benefits and am in touch with Headway. Regards. Deb
Hi Debbie, there shouldn't be a cut off, neuro-psychiatry is a very different discipline to generic mental health, age, and time since injury should not be a consideration. The referral by your GP is key in acceptance, and has to be clear why the referral is being made.
Many conditions may have similar symptoms, but the causation is very difficult from generic mental health, and required different treatment.
Hi Pairofboots, thank you for your thoughts. 40 years ago when I survived a TBI there was no such thing as Neuropsychiatry and so I was never put under that Discipline. Community Mental Health Teams say that they do not have the knowledge or expertise to be able to appropriately assess me due to Cognitive and Communication Impairment resulting in them referring me to Neuropsychiatry. Neuropsychiatry declined the referral as they said that I am too far post injury to benefit from treatment. I have had to pay for a private Assessment and Diagnosis from a Consultant Neuropsychiatrist in an alternative Healthboard. Her report and recommendations have been ignored completely and I know that my Healthboard will not fund treatment in her clinic or inpatient care. As you say there are different disciplines which need different methods. After being informed that PTSD was not recognised, assessed or treated as it was diagnosed in a different Healthboard Area, I was finally assessed and a referral made which leaves me on a waiting list at least 18 months. No Care Plan or support in the meantime. Borderline Personality Disorder completely dismissed and Chronic Depression unrecognised and untreated. Sorry I do ramble. In short the CMHT are unable to treat me due to lack of understanding and expertise and those with the ability, Neuropsychiatry, are refusing to treat me as it is 40 years since my original TBI. Nowhere or No-one to go to. I don't fit in a box and am Complicated and my suggestion of a Multidisciplinary approach totally ignored and not even recorded. I am balanced on a Cliff Top and the NHS Mental Health Services are Pushing Me! No need for me to jump as my Self Esteem and Self Worth are already in bits at the bottom of the cliff thanks to the NHS. So Hard. Especially as I have personally worked hard for 40 years to maintain as healthy life as possible. I have run out of energy and fight now.
I'm sorry to hear this Debbie. I don't see the difference between four months to forty years. Your problems originate from a TBI, end of, in my view. It is essential that you are assessed and treated by the correct discipline.
As you have already found that this leads to misdiagnosis, and therefore the wrong treatment.
Health boards are now commissioners, the unfortunate damage the NHS has been damaged by successive governments. This leads to the breakdown of joined up services. The CMHT have stated that they are not appropriate to assess you.
For the commissioners to refuse you appropriate care, even if they have to outsource that treatment, is a breach of the patients charter (right to access treatment), breaches the disability rights act (right to medical, psychological and functional treatment......), and is in breach under the human rights act (article 14, article 8, and possibly article 2. Protection from discrimination, respect for your private and family life, and the right to life, respectively).
I have considered if this is a breach of Human Rights and also whether I should take Legal advice. Not for me but for the hundreds or thousands of people with comorbidities that are misdiagnosed, not understood as combined issues, and quite frankly undiagnosed or treated. False economy. Who should I talk to? CQC, Community Health Council, Mind, A friendly Personal Injury Solicitor? I might be wrong, I might just be getting tired, I might be delusional. I need a holiday and escape to where I don't know anyone and time to take stock. Thank you for your advice.
I think if you were to take the issue on, it would be good. But I think that you would need to take a class action, to share the cost.
It isn't something most people can afford to take on. If you happen to know a personal injury lawyer, they might be able to advise. A human rights charity might be a good starting point.
Avoid no win no fee, ok if you don't win the lawyer won't charge, but the court may award costs, this will be awarded against you, there is always a catch.
Hello Debbie - I am 23 years on from injury and have been (my view) regularly abandoned by both family and the medical profession. My wife walked away and got our business in the immediate aftermath as did the neuro rehab people. Dad took me back but he died 6 years ago so then my younger brother felt emboldened culminating in them throwing me out of our family business and the family home where I had lived for 20 years. In the 18 months since have been through several hedges backwards and am still fighting - there are a few okay days but mostly not so good.
I have an appointment (telephone like everything but may be about to change?) with local mental health team Wednesday and local Headway chair lady is arranging a meeting shortly.
Keep going (no matter how difficult)
Hi Nafnaf87, I am sorry to read about your challenges on top of dealing with your injury. This is an example of where relative's and employer's need education, information and advice are important. My Headway group Staff have attended appointments with me and witnessed the bad treatment I have received. Telling me lies, refusing to allow me to communicate in writing as I have difficulty verbalising thoughts and feelings, saying what they think I want to hear and whatever keeps me quiet. The CEO has written to the Head of Community Mental Health Teams expressing concern about the total lack of care and understanding. Headway are expected to be able to manage and support me as a Charitable Organisation. I admire your fight and strength (for a long time) but I have run out of energy and fight. I don't want future generations to have to go through the same Jungle as me to reach an Oasis that is empty. Good luck with your meeting.
Good morning Debbie
The telephone appointment with local community health person was the usual disaster - just repeated stuff that I said 6 months ago at me and as usual told me I am doing very well. Did the usual telephone assessment thing, answers scored 0 to 3, apparently they were also better than 6 months ago. They were because I could not be bothered to say I'm either going to chop myself up or commit suicide immediately.
Apparently I am going to be referred on, when who knows.
Recently had the jab which was alright. 6 hours later the side effects kicked in, I thought I was going to die but that would have been okay .... had it happened. Still suffering heavy fatigue and headaches but as I am not sure whether that is jab induced or just the usual can't be bothered with GP.
Got meeting with local Headway chairperson Thursday .... at last so may make some decisions after that.
Debbie I know how tough it is e.g. Prince Philip passing gave me a good excuse to get all emotional (big tears), but, please do not stop. We must keep going.
Best wishes
Michael
Hi Naf, sorry to hear you get the same s☆☆t. I had a call and the CMHT said they were having a meeting about me and would let me know on Friday what kind of support they can offer. I think this is a result of the CEO of my Headway Group writing to complain. I hope that UKABIF, the All Political Party Group and the Neurological Alliance along with Charitable Organisations can make a difference and accelerate the reforms so badly needed. Keep your chin up and tell them straight at your meeting. Good luck.
Hi Michael, I got a bit angry with a GPas the CMHT are taking months to decide what to do with me (Mental Health Charter and NICE say I should have a face to face appointment with an allotted Community Psychiatric Nurse within 3 weeks or 2 weeks if I have attended a hospital for treatment such as self harm or overdose). Ok so Covid-19 is having a massive effect and maybe I am being unreasonable but if I had a bit of communication and they were honest with me things may be a bit easier. Today I have a telephone appointment with a Psychiatric Nurse attached to my GP surgery. Haven't been to sleep yet, thinking this is probably going to be a waste of NHS money because she has no Neuro knowledge. Back to square one.
Unfortunately it has become impossible to trust any medical professionals because of the constant lies I am being told on a weekly basis.
Hang on in there Michael.
Best Wishes
Deb
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