Lack of mental health support for carers?

I went to my GP several months ago to say I was struggling - feeling very anxious and depressed. She was lovely - prescribed medication and made a referral for counselling. I then had to attend several appointments/ assessments. Today I received a letter (very badly written and structured) basically saying that as my father hasn’t died yet I can’t receive any counselling. That I should join CarersUK to get support with caring issues and to phone the Samaritans if I feel suicidal.

Sometimes I just despair over how carers are treated. It is well known that suicide rates are higher amongst carers than the general population but limited support is given.

I hope other members have had more success.

Faye, that is absolutely terrible.
The person writing this needs to be struck off the counsellors register. Was she a qualified counsellor at all, I wonder?

As you know, I found face to face counselling incredibly helpful when I was stressed with so much going on at one time, and I know you are in an incredibly difficult situation too.

Totally disappointing if it’s NHS…

Mental health services is very restricted at the moment, very few are getting the support they need through the NHS.
And there are long waiting lists.

The GP’s are restricted as it is not them that make the decisions, all they can do is give antidepressants and refer.
Have you tried your local carers centre asking them?
In my town there is a big therapy centre, it is private but a charity, on a pay as you can afford basis, is there anything like that near you?
Have you a Relate nearby, they might be able to help or advise or a local Mind, some do have counselling services you can apply to.

It is really bad us carers should be able to get the help and support we need to carry on but no one seems to care.
Have you had a carers assessment, under the Care Act, the council has to think of wellbeing.

I agree though it is disgusting what the counsellor said, well worth complaining, but I suspect you did not meet the high criteria for getting help and support.
My caree passed away and despite asking, no bereavement support was ever provided, I was just left to cope on my own.

My counselling is now funded as the result of my Carers Assessment.
That’s the good news.
Bad news?
I have been a carer for 41 years and this is the first money I’ve ever managed to get out of Social Services for myself!

It does not have to be like this.
When my cared for person was a tiny baby I asked the new general pediatrician to recommend a doctor for my caree. It was only after speaking to another specialist at the hospital that I was able to find a urologist. I rarely use my GP practice these days as a result of that awful meeting which happened at the end of 2017. It felt like torture honestly.
I now instead usually just bypass them and ask other carers or the doctors themselves for advice. I cannot even remember when I actually phoned the surgery or stopped by the practice either. Can you complain about this person to your GP or not?
My original one was lovely but not able to help much. Counselling will help you.

Faye, this is just dreadful. Please inform your doctor who referred you.

As for MIND, I would advise being prepared for a long wait too.

For an indication of the latest " Waiting times " , the main MENTAL HEALTH MELTDOWN thread :

It doesn’t make good reading … for obvious reasons.

Thank you, as ever, for all your kind and helpful responses.

Earlier this week I was informed by my fathers consultant that he has less than three months to live. On Wednesday the hospital discharge co-ordinator called. We had asked last year (especially from July onwards) for a contuining health care assessment to be completed - I had chased his social worker constantly but got nowhere. They had now completed the assessment and I was told that the CCG would pay for his care. However on Wednesday I was told the hospital wanted to discharge him home on the same care package that he was on when he was admitted. His needs have changed significantly since then (for example he was partially mobile with a stick but is now bed bound) - they said they would do an urgent assessment once he was home. Obviously I said no - I wanted the assessment/ an increase in hours before discharge.I have written a formal complaint saying this would be an unsafe discharge (he also still has some medical issues that I would like them to resolve before discharge as they would be difficult to treat at. home eg bladder infection and compacted faeces), We are at a stand off.

I have asked about hospice care. They have said that it is not possible for him to go into a hospice and continue to receive dialysis. If he stopped dialysis it would bring his death forward to just one/several weeks time. Obviously Im not prepared to do this. I don’t understand why you can’t continue to have dialysis whilst living in a hospice - surely patient transport could as easily pick you up from a hospice as from his flat?

Still no news on the personal injury claim about his fractured humerus. Patient Transport Services admitted liability in the summer. So it should just be a case of agreeing a settlement figure but everything seems to take so long.It took the solicitor nearly six months to appoint a care expert but obviously Dads health is deteriorating all the time so I’m not sure what use their assessment will be. We shall see. I’ve chased again.

Unfortunately it just never seems to end. People are paid (in many cases handsomely) to do a job and there is just so little support for us carers. Its all so very depressing and makes me despair at what we have become as a country. Oh well just have to get on with it. Thanks again for all your advice

Hi Faye, So sorry to hear the latest. You and your dad have been through so much and you’ve stood strong and done the very best.

Have you asked what your dad wants to do? Perhaps it might be best for him to go to hospice for hospice care. He would have caring trained staff available 24/7.

My mother spent 17 days in hospice. The place was calm and peaceful and the staff were attentive. She was in a room with three other ladies who would keep an eye on her and call for assistance when mum appeared to need it. (Mum could use the call button so the larger shared room was better than her being in a single room.). She had a uti, constipation and cancer. She was taken off all medication. I opted for hospice care in a hospice because I felt it meant mum would have medical staff there when she needed them, and I would not be on call all the time, having to wait for nurses to arrive, etc. It was easier for me to visit, rather than do a lot of the caring at home. Mum was ready to die and felt she’d been lingering, bedbound, for too long already. She had no quality of life.

Im sure more of us will offer their thoughts soon. All the very best. Rosemary xx

Thank you so much for your kindness Rosemary. It really does mean a lot- thank you. I’ve been feeling very alone dealing with it all. Unfortunately my father isn’t well enough now to express a view so I’m just trying to act in accordance with what he has previously said. I’m trying to take it a day at a time but it’s not easy. Everything seems to be a struggle. I feel very alone and isolated - amazing how family and friends disappear when you need them. The number of people who have said they love me and want to help but the minute I ask for anything other than a text disappear…

Today I tried to take him off the ward for something to eat. We went to Nando’s (he loves chicken wings). Unfortunately although I managed to get him dressed and wheeled him down there (it’s next door to the hospital but still took me two hours) for the first time ever they refused to let us stay (said the wheelchair was a fire hazard!!- we’ve been there hundreds of times and it’s never been an issue before: who knows…). I bought my father some take away and , very kindly, a local cafe let us eat them inside.

I think tomorrow is going to a big struggle and am dreading it. Spent all morning crying but know I have to pull myself together. I think the hospital are going to press for him to be discharged home on his existing care plan even though they know his needs have changed significantly and no one could reasonably say we can cope with two visits a day (for example he’s bed bound and to treat the compacted pooh they have given him three types of laxatives: as a consequence he went to the toilet 8 times yesterday). Of course I will press back and say it’s an unsafe discharge but not sure they will listen, despite my having lasting power of attorney.

I did go to see the hospice near me earlier this week but, even if I could get him in (it’s my catchment area not my fathers) they are unsure if he could have dialysis. If he can’t have dialysis they say he would likely just have one week or a bit longer to live rather than three months. I couldn’t cope with doing that to him.

I do feel very low at the moment- it would have been good to get counselling but obviously not meant to be. I just want to focus on what my father needs now but feel broken. Am hoping I will get some strength from somewhere.

Thank you so much for your kindness it does mean a lot.

Very sorry I didn’t get back to you sooner. Your outing to Nandos has put me off eating there. Having been in America for 30 odd years, I’ve never been in one. They must never have heard of reasonable accommodation!

How did you and your father get on with the hospital? I expect you went to the meeting well informed and armed with questions. Will you have palliative care or district nurses to treat the constipation? I’m of the opinion that hospitals prefer people not to know the system or their rights, but you must have been very well prepared.

Thank you for your reply. Dad loves Nandos so think we will just have to find another branch or get takeaway lol!

The hospital still haven’t arranged a follow up meeting. I have been to six discharge meetings now- each with different people attending and to be honest they feel like a waste of time (I just end up repeating what I have said at the last, people agree to take away the same actions and nothing seems to progress).

Yesterday I did receive a phonemail from my fathers social worker. He said the hospital had confirmed to him that my father had been accepted for NHS Continuing Healthcare but had been assessed by the OT as needing night support and the CCG weren’t willing to pay for that. Ive emailed the hospital asking if they can put it all in writing to me so I can fully understand and consult on what they are saying. They’ve been reluctant to put anything in writing so far - we shall see.

I’m not sure what to do if they refuse to provide any care at night (his last visit is currently at 6.30pm without another visit until 7.30am). I dont know if anyone else has ever received night care - we have been told he has less than three months live so its not a never ending commitment but I dont know if they just simply won’t meet this need.

To be honest I am totally exhausted- not sleeping and feeling vey stressed. People keep saying to look after myself/ not get ill- but there’s just no help or support and everything seems a fight. Its all very lonely. I simply dont know how people do it.

Very good news about the chc. I’ve not had any experience with that. There are many discussions on here including:

I think it will be for the hospital and CCG to sort out. Don’t volunteer to pay any top up fees.

Now you need to play a wating game. Get the “Granted CHC” letter/email first.

Once you have it, go straight back to them with the relevant page from the CHC Framework which says that if granted it covers ALL health and social needs.

Thank you so much for your advice.

Tonight a very strange thing happened. When I got back from the hospital I opened my emails and in it was a letter from the hospital chief executive, It acknowledged that ten days ago the renal consultant had met with me and talked about my father having three months to live , fast track CHC and hospices. It then went on to say that the Palliative Care Consultant had seen my father two days later and ‘she felt he was stable and did not meet the criteria for admission to a hospice at this time’. I do not have a clue what this means. Is my father going to live longer ? Has his prognosis improved? Why has no-one spoken to me before- I’ve been at the hospital every day for hours…

The letter also goes on to say that they will now seek to discharge to assess (D2A) - I dont understand what that means and how it differs to fast track CHC … Apparently the local authority will now lead rather than the hospital (although I was told by the Discharge co-ordinator and social worker the hospital had already applied and he had been accepted for CHC…) . I am so very confused… I have read all the links circulated by Chris (thank you) and the CHC guidance on the web but to be honest I am none the wiser … just very confused and with a bad headache…

Discharge to Assess (D2A) supports the discharge of people from hospital who are clinically stable but who require further assessment to establish their on-going health and social care needs.

As Londonbound explained, Discharge to Assess (Home First where I live) sends the discharged patient home (freeing up hospital’s bed) with a care package to see how they cope in the patient’s home environment. The LA then comes to home to assess.

Id be asking for clarification re the CHC. What the heck is going on?! It’s one way to have the LA pay and not the CCG.

What about hospice care at home? The OT maintained he needed overnight care, didn’t they?

Sorry, but I think this comes down more to politics and definitions than any measurable improvement of your father’s health.

Please can you help me - am I going mad?

Nearly two weeks ago I was told by the hospital that my father had about three months to live - they were applying for Continuing Healthcare and looking at hospice options. Ten days later we got a letter from the hospital to say my father had been seen by the Palliative Consultant , that he had improved and a hospice wasn’t appropriate at this time. I was surprised to receive this letter- have been in the hospital every day for hours but no one has spoken to me. I asked for clarification if what this means from the hospital - is he likely to live longer than three months etc.

Today I received a phone call from a social worker at the council. She said she had a convent run call with the hospital and his prognosis is much better. I asked who she had spoken to - she wouldn’t tell me. Yesterday when I was there Dad didn’t speak or eta or drink all day. She said that wasn’t the point if the call - she would t tell me who she had spoken to. I have lasting power of attorney. She said she just wanted to discuss him going home on his existing care pa large. I said that was ridiculous- his existing care package is based on him being able to walk. Why won’t the hospital speak to me ? Why won’t she tell me who advised her that his prognosis has improved - so we can ask questions like how long they now think he had to live? Am I being unreasonable? Are my questions mad? A dr told me he had three months to live - I just want another dr to tell me that’s not the case - if that’s true. Is that u reasonable?

Faye, you have POA?
Then start using it.

It now becomes not about dad, but about the hospital’s complete and utter INCOMPETENCE!

Ring the CEO, speak to his/her PA and make a formal complaint about a proposed “Unsafe Discharge” Be sure to say that very, very clearly.
Say that there is clearly no communication between everyone because everyone you speak to tells a different story, which is nonsensical.

They have no right to involve a social worker until an NHS Continuing Healthcare Assessment has been done.
That MUST involve you. Suggest that those involved appear to have an urgent need for a CHC refresher course.

Demand copies of everything on dad’s file since his last admission.
Demand to know IMMEDIATELY the names, role, and qualifications of all concerned in the latest fiasco, especially the consultant and whoever rang Social Services.