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Hi there.

My father in law (FIL) had a severe stroke in mid-June and it’s been somewhat of a rollercoaster.

Good news, he has been discharged from Wolverhampton West Park Rehab hospital to home today to continue his recovery and I wanted to share our current experience to see if this is normal and ask how we actually close the gaps we see as I really feel like we are being let down by the system.

We were assured at the 2 discharge meetings we had with the team, that he wouldn’t be discharged unless everything was in place to ensure a seamless recovery when he’s at home.

Reality (and our expected fears) are being confirmed as he’s been sent home with a catheter fitted, and a pad, but we have been given zero spare continence pads for the first couple of days, which we were promised before a new delivery arrives from the community nursing team. However the referral for those hasn’t been sent yet !

We were also told he would have a full schedule of carers lined up and we would be told what the schedule is and expected duties in advance of him coming out. Again we were told nothing and have had to chase for the number of the care company and contact them directly to find out what’s happening.

As for this therapy, we have been told his speech therapy has been referred but could be 12 weeks before this is picked up and no information on his physio but I fear it could be the same.

It really just feels like they have accelerated the last couple of weeks to get him out and dump him at home so he’s not their responsibility any longer and we as the family then have to try and co-ordinate everything but we are starting at zero and I feel nothing but anger for the entire NHS system at present.

Is this normal, are we missing something, who do we contact to sort these things out ?
Am I being unrealistic in my expectations that this should all be sorted before he came home, and it will quickly be resolved ?

Honestly I have zero faith anyone will do what they say as on evidence so far this simply doesn’t happen and there are so many different teams/departments involved, no-one talks to each other or has a clue what is happening.

Maybe I’m just ranting but after 5 months of health issues in the family my wife and I are exhausted (we are the only family for her parents) and we’ve just had enough.

Don’t even get me started on how we find out who is social worker is now discharged and how we can demand a CHC funding assessment as if they have to pay for this sh1tshow and lose their savings that will be the last straw.

Thank you for letting me vent…

He has is currently doubly incontinent, and has a catheter fitted and pads but despite promises

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I can’t comment on the other stuff but I can say that for the first six months, the brain is doing its spontaneous repair and so plenty of rest is beneficial. I say this so that you can prioritise your focus and not get stressed about physio just yet.

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If my own experience is anything to go by, your experience is not unusual. Rehab units are desperate to free up the bed, and there is much promised that doesn’t get organised. The more fuss you make, the better responses you will get. It’s not personal; a wide vein of administrative crass incompetence runs through the NHS.. There should be a person in overall charge that you can liaise with, but it isn’t always easy to find out who it is.

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@Robbo77 i recommend that you reach out to the stroke association who have been nothing short of fabulous for me.i was in a rehab hospital for 5 years,then discharged to a dreadful nursing home,I don’t know who my social worker is either,and everybody I ask won’t/cant tell me!it’s a very broken system,but I have had some positives the speech and language therapist that I’m now under is far superior to those at the rehab hospital and I can now just about hold a conversation.physio is a different story,I was placed in this nursing home because physio was part of the care package but the physio is NEVER here.

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Hello @Robbo77 - I will start by saying “Hello and nice to meet you”.

I am saddened after reading your post, but not at all surprised. I totally agree with @Dexster and I feel you will need to do exactly as suggested by Dexster.

Everything about this is wrong and it needs fixing asap. Your FIL cannot be looked after at home in the current state - there is nothing in place!!!

I don’t know where to begin as I don’t know the details, but as @Rups says, you need to prioritise and create a check list and tick things off one by one.

In the first instance, my advice to you is to go back to the hospital.
Go back to the ward where your FIL was and ask for emergency supplies for the care needs i.e. Pads etc. Also he should have medication that should have been given as well as note to the GP for on-going/repeat medication.

I assume someone can stay with your FIL.
At the hospital, you should demand to speak with the discharge team.
You should also make a formal complaint about the shambolic discharge.
PALS may be able to help, but you may find it is quicker if you put your foot down and be assertive and insist on speaking to the person in charge of your FIL’s discharge.

Take this message with you and your discharge checklist and ask them how it is that nothing that was discussed is in place yet your FIL is at home.

Who is caring for him?
Where is his care plan?

You should contact the community nurse as they should be coming to check your FIL.
The GP should come to visit to check the care plan meets the needs.

I am sorry, but I can’t think clearly now, but I feel you need to put in a structured plan to sort this mess out and start by not accepting anything that you are not happy with.

For me, your FIL should never have left the hospital and I don’t know how this happened without you or someone agreeing to it on behalf of your FIL.

I really hope your FIL is not too uncomfortable, but this really does sound very bad and I feel bad I am not able to offer a more constructive response.

You are here for help/advice and moral support and right now I feel I can only offer you moral support.

I wish you and your FIL all the best.

Once my brain clears and I am able to think clearly, I will try and offer some more suggestions.

Namaste|
:pray:

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Hi robbo77

I can fully understand your frustrations.

I had that family meeting at west park and my husband was home within 2 weeks; care package arranged , hospital bed and equipment installed, pads delivered etc ( i might be making it sound seamless, it wasn’t)

My husband was paralysed and zero speech.

Looking back now I can’t believe we both survived it!

Speech therapy eventually began about 4 months after discharge!

Physio was more or less straight away.

I can’t praise the staff from west park enough for all they did in helping my husband on the road to recovery but they are stretched beyond belief.

It’s just incredibly hard dealing with everything .

Keep going & stay strong!

You are not alone.

Jan

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Hi @Robbo77 and welcome to the community. What a difficult situation you are in. I cannot believe (or maybe I can) that you have been put into this position. Your FIL should never have been discharged without everything being put in place. It is an unsafe discharge and you should complain. However, that won’t change anything right now.

I agree with @ManjiB go back to the hospital get the supplies you need. Contact the GP and get them to visit and sort out things that are an immediate need. Do give the Stroke Association helpline a call 03033033100 as they can advise on what you need to do and where you need to go for help.

Try Adult Social Services at his local council for a care assessment. I wonder if you need an occupational therapy referral too so they can assess the house and check it is suitable /provide aids & adaptations that may be required.

When you are feeling more able complain to your MP too and definitely PALS.

Feel free to vent away on here. We’ll try our best to advise as best we can.

Sending strength to you all.

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Hello @Robbo77 , there is already some excellent advice being given by others already, I live in Scotland so some names and suggestions may be different, if your FIL has been discharged which it looks like firstly hospital should have a social worker/ team there to assist it’s their job to do this. I met mine whilst doing another patients housing benefit form for them so she was happy I knew if I needed help knew where to go.

I’m not sure your catchment area but they will have an “area team” or local based social workers in adult services who should help- there always one on “duty” Monday to Friday give them a call and make a fuss FIL deserves it never mind needs it, similarly your FIL’s GP practice can arrange things and help with supplies.

I would be asking social work for an urgent care assessment for FIL and I assume his wife to see what help she needs most teams have an online form and have to reply in a given time, they also have out of hours services- maybe slow but still need to respond.

Sadly our underfunded systems are in crisis more than ever I do hope FIL and all the family get the support they need, a family friend was close to a journalist and when he needed a story landed in local paper - never seen so much red tape disappear in a morning it was like it had been torched by a flame thrower, sometimes a local council member is good and can help move things along.

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Hello @Robbo77,

Oh dear - what a tale of woe! The NHS is brilliant at some things and abysmal at others! Much of the problem is lack of joined-up thinking in ADMINISTRATION -or downright incompetence ! I was dead on arrival after a brain bleed/stroke but I was resussed,. and was in ICU for over 5 months. then there was a sudden rush to discharge me home. Yes, they promised me a “full care package” which had to cover access to my home, so some minor alterations, like a ramp to get me to the front door in my wheelchair (my whole left side was useless).But the ramp itself was useless as it did not get me OVER the threshold - the two ambulance crew had to lift me (in my wheelchair) over the threshold and it then took the two of them to transfer me into the bed the hospital had kindly provided. But what was to happen after they left? Elf 'n Safety insisted there had to be TWO Carers to transfer me to the loo. So, my dear wife had to take the strain alone! Then the Council removed the cap on my financial package and I had to pay the full cost.

I was told in hospital that I had to get my head around the fact that I would never walk again.It is now over 5 years since my stroke and after a huge amount of hard work and expense on private physios(£2000 per month), as hospital NHS physio stopped after 12 weeks (despite it being in my “care package”).but I can now walk a little. with sticks!

I had always worked hard (and saved!) during my career but my “rainy day” fund ran out in a year or two, so now my home is at risk.

We’ve all been misled by successive governments into believing the “cradle to grave” NHS philosophy. IT IS A MYTH !!!

However, my time in the Parachute Regiment taught me to be self-reliant so a shortage of NHS incontinence pads was sorted by a (not-too-costly) delivery from the supermarket. My advice is do not wait for NHS to sort everything out. No-one has told me about a social worker or how to make contact!

One thing for sure is that you CANNOT go back to hospital (except via A & E) after you have been discharged.

Best of luck.

Bob Isle.

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Firstly, thank you for all of the replies and sound advice/experience shared, it’s really appreciated.

After many phone calls, including to PALs, things are hopefully moving a little more in our favour with dad, he is home, physio’s are doing there initial assessment later today and speech therapy are doing the same tomorrow. No idea how often they can actually provide therapy but at least that’s a positive start.

We now have pads for dad, some from the hospital who apologised for forgetting to provide a short supply and some from the care agency, to top up our emergency purchases whilst we wait for the referral to the incontinence team.

District nurse referral now seems to have happened but awaiting a call, and hopefully the GP is now aware he exists and isn’t living his best life !

A long way to go before we can say we have a new routine in place but I think we are starting this week better than the last ended, so thank you for your words of encouragement.

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It’s good to know things are falling into place and this week has started better than the last one ended. Things may move (or appear to) move slowly, but stay calm and

please don’t take no for an answer unless you agree with what has been said or offered.

Also, give yourself and family co-carers time for yourselves as this is important if you are going to care for your FIL.

If things aren’t moving, please do not hesitate to chase up.

In our experience, if it is seen by others e.g. GP, District Nurses and Third party carers that you are actively involved in the care of your FIL, they may take advantage and pass some of their workload onto you. Also, try to keep them on your side because we still need to rely on them and we don’t want them having their backs up which can make our lives and more importantly your FIL’s life less comfortable.

This forum is here for you if ever you need advice or just somewhere to let off steam :slight_smile:

:pray:

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Good to hear that things are starting to get sorted. Here’s to this week being better than the last one & please don’t forget to look after yourself too.

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Hello - I’ve only just come across your posts. I’m a stroke survivor and sill practising social worker. I have worked in the past with people who have had rehab at West Park to get them home. If I can help in any way, please let me know. Regards. David

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Thank you David
Things are progressing now and I think we have some sort of routine in place and we have the supplies we need, at least for now.

The next part I’m really uneasy about is how we move forward with asking for a CHC checklist to be done as everyone I speak to right now tells me ‘Oh that’s not me’, but it feels like delaying tactics.

Maybe I’m living in dreamland that he can get CHC funding, but we have to try and really not sure when we should really start to push for this, and to whom.

He’s been home now since 2nd September, so I’m conscious we are now in the 4-6 week window when temp funding might end, but no-one has spoken to us about it at all since the initial visit the week he came out.

Do I push, or do I stay quiet and let it carry on until they get their house in order ?
I just don’t want to suddenly get pulled into a call at short notice to say it’s ending and they rush through means testing etc to grab his savings before getting an assessment done that I’ve been asking for since he was in West Park.

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If your father-in-law is going to need local authority funding assistance to pay for ongoing care it’s likely it would want a CHC assessment to be undertaken to establish whether all or part of that care needs to be paid for by the NHS. To get a CHC assessment undertaken, a CHC Checklist has to be completed. If a community nurse is visiting as part of his hospital discharge, s/he could be asked to complete it. Otherwise you could try his GP.

If you google Continuing Health Care you will find the Checklist, also the Decision Support Tool which is completed as part of the full assessment.

CHC funding is very hard to get, especially for people being supported in their own homes, having access to community nursing if needed. I should know because I work with nurses to assess eligibility for CHC funding. Whether your father-in-law needs ongoing support which requires nurses to monitor, eg breathing difficulties requiring oxygen, feeding difficulties because of swallowing problems, damaged skin due to open wounds and pressure sores, etc needs to be established.

You can ask for a Checklist to be completed to see whether your father-in-law would be eligible for a CHC assessment.

As you probably aware, the threshold for local authority funding assistance is £23250.

If you want to talk about anything I’ve written or talk about how you might go forward, I am happy to do so.

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Hello @Robbo77 - I note that David @DavidHearnden has already responded and he is much better qualified to help and advise on this matter both on a professional capacity being a social worker and a personal capacity as a stroke survivor.

I myself was composing my response as I thought I would share my thoughts from a carer/strike survivor perspective.

I start by saying I echo everything that David has said and then I offer the below in case it might be of help. So these are my thoughts and suggestions.

As I recall, your FIL was discharged without proper planning and with some or all of the things you were told would happen/be in place not happening/being in place.

After that bad start, there was a slight recovery and luckily during this time, nothing bad happened to your FIL. That was over a month ago and the stroke was in June.

To me, this is really falling below standards that would be considered acceptable and I am not sure why it is happening other than I know it is a post code lottery and maybe you are very unlucky.

If this is going to be fixed, I feel you must now take ownership (and if you need help i.e. can’t do it by yourself, get some help) and start making things happen. Now is not the time to be “nice” and wait for things to happen. Having discharged you from their care, the hospital and the care team are busy with other patients and it is the new patients who will take their time - they are visible, your FIL is off their radar.

If you feel a CHC assessment is needed, then you should chase it.

There is information here on the NHS website about this.

NHS continuing healthcare - Social care and support guide - NHS

There is also a company who helps - again listed in the information and advice section of the NHS article above.

Information and advice

The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice on NHS continuing healthcare.

Visit the Beacon website or call the free helpline on 0345 548 0300.

As per the above, I would suggest you call Beacon and let them help you.

How long are you prepared to wait for them to get their house in order?

:pray:

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Seeing ManiB’s post, I would advise being wary of what Beacon (and there’s another company Compass) says it can do. I have done many CHC assessments where these companies have been present, and their involvement has not helped the person’s case. Also, involving them can be expensive.

Eligibility for full CHC funding is determined not only by the nature of the person’s health and care needs but also by how intense, complex and unpredictable those needs are.

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Hi David - thanks for the warning about Beacon (and other companies).

I don’t have any personal experience of these companies and wasn’t necessarily recommending them or endorsing them, but I note they are mentioned on the NHS website in the section about the CHC.

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As per the NHS’s own website, they offer free independent advice on NHS continuing healthcare and so I was not aware they charge for their service or are not helpful.

Again, as per the NHS website and as I understood it, @Robbo77 was looking for a steer and so I felt this might help.

As you know, you are much better qualified and experienced on these matters and I often champion you to members of this forum for that very reason.

I would hope that the NHS is not providing or recommending bogus companies, but at the same time, I am also aware of the havoc these government appointed companies can cause to the public e.g. ATOS, Capita etc. So if we are to add Beacon to that list then I appreciate the warning and I shall try to be mindful of that in future.

:pray:

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Hi Manji - Hope you and your Mother are well.

Beacon and Compass will give free advice, which you can get on the CHC link, but if you want them to represent you in the assessment you can pay a lot with no guarantee of success.

Eligibility is determined not only by the nature of the person’s health and care needs, but by the intensity, complexity and unpredictability of those needs.

Beacon and Compass can help you make your case, but their involvement does not guarantee the person will be found eligible for full Continuing Health Care funding.

Regards - David

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Thanks David - that helps clarify things :slight_smile:

:pray: