No help!

[debbie36a]

Since my husband was discharged from West Cumberland hospital in Whitehaven we have had no after care at all I'm so worried about his state of mind and He on waiting lists galore. Even for physio 😢 I'm about at my wits end it's just not right. He desperately needs some phycologist help and im getting no where in cumbria

[StrawberryCream]

Anything from the NHS unfortuately involves waiting lists either because of the number or people requiring the services or because the service is a postcode lottery of how well or even if it is funded in your area. I have been on many waiting lists too and it is so very hard because you yourself know something is needed 'now' because you are living with the struggles and concerns. When I did get into some of the services it then became apparent that in my area they were such a small service that they weren't able to offer all that was needed because weren't sufficiently resourced. I am still struggling with having had very little neuro psychology input because it just wasn't available in my area! Had the neuropsych testing but then the Brain Injury Team weren't able to do the follow on work to help me manage the problems.

I am hoping that in your area that once your husband is able to access the specialists he needs that they will be able to provide all the follow up he needs. Where Brain Injury is concerned it is sadly a postcode lottery of what you get, however, it is a service in the past years has been considerably developed as it has been recognized that it is very much needed. Previously the impact of Brain Injury was not really much understood. If you husbands Brain Injury is of a causation that you have a legal case pending then I think you may be able to access services privately?? For me that was not the case.

The only suggestions I can offer is that you go back to your husbands GP and see if you can increase his/her concerns that some help is needed more quickly so that they try and speed up the apts. In the meantime have you been in contact with Headway?? Even if they don't have a centre in your area ringing the helpline is great for off loading and seeking advice and ideas. Also even if they don't have a centre in your area there may be an outreach service which offers a home visit.

I sense your enormous frustrations and I empathize with you because I know how the long waits for essential services can add to the distress and struggles big time.

[headwayuk Partner Headway]

Hi Debbie,

Thank you for your post and I'm very sorry to hear of this situation.

If you contact our helpline on 0808 800 2244 or [e-mail] we can talk things through and try to get you the support you need.

We look forward to hearing from you soon.

Best wishes,

Headway

[sporan]

Hi Debbie,

I believe psychological support and in particular neuro psychological support is under severe pressure.

The person I was seeing was on a fixed term contract and because of funding cutts wasn't o be renewed had to leave before our sessions had been completed. She had referred me to one of her collegues who agreed further sessions were need.

I was told there my be a bit of a wait but that was at the end of April this year and despite a direct approach by me to the department over 2 weeks ago I still haven't even had an acknowledgement that my e-mail had been seen let alone any guidance as to when the follow ups are to occur.

I made the direct request because of a sudden and scary change in my mental state and as directed by the GP who said "You are more likely to get a response if you contact them directly than by us referring you for further help" Hmmmm!

However my local medical practice is good for physio refferal which again operates a self refferal system but seems to react quicker and better.

I am in the South-West so it would appear that this may be a general problem.

Hoping you soon have sucess and that the headway support administrater can be of help. I know they are really good.

Take care

Sporan

[Hidden]

Have you tried your local Carers organisation. Go to Carers Trust web site and find the local one to you. They support you as an unpaid family carer and mine are great at cutting through the red tape etc for my dependant. Good luck

[malalatete]

OK - this sounds really tough. first take some deep breaths, because you will need all your strength to fight the fight ahead.

Wait and wait and wait is the NHS mantra. Talk to Headway - lovely people have been in contact already! - they may be able to bang the drum on your behalf.

Write to every and any health professional your husband may have had contact with to get him the psychological help you think he needs - you may be surprised at how easily it is to be referred to these services (but then horrified and astonished at how long their waiting lists are).

Don't forget the power of the talking cure lies in both ends of the conundrum - your role in this can be to listen whilst your husband talks; not to advise, or comment, or say what you think - just simple (but very difficult) listening whilst he gets it all out will do him the power of good. Verbalising things by its nature externalises them, gives them a different perspective. Arming yourself with a cup of tea and listening ear whilst you wait for professional input will give you huge insight, and your husband a releasing let-out.

Huge waves of sympathy and support being sent in your direction, Debbie x

[sospan]

First off you have found a good place there are many carers (and survivors) on here that have gone or still battling their way through what you have experienced.

I too found services extremely difficult to get signed up to. Then when he did see me they just said that you seem to be doing the right thing carry on, next patient please ....

One of the things that is the hardest to deal with is that life has changed and so will your husband. It took my wife ages to get used to this new bloke she was married to. Although I looked the same the personality and personal traits were all different for a long time.

One of the best things for both of you to watch is the you look great series youtube.com/watch?v=x9Xso4q...(Not working as expected?)

There are 6 videos in the sequence from a survivors perspective

Whilst every head injury is different you are following a path many have trodden before you and will help you on the way