Care in the community by Mark Gray

Mark Gray

Mark Gray

In 1990 the government introduced care in the community to avoid putting elderly people into hospitals and residential care homes. It’s been much more expensive to deliver than the government first thought with the community care budget being spread very thinly. Even with extra investment, care in the community needs to address some very fundamental communication and integration issues between provider groups and individuals.

Caring for an elderly relative can be extremely stressful and upsetting. I feel strongly that a more holistic approach is required rather than a collection of professionals and their coordinators each trying to manage situations in apparent isolation of one another.

I speak from experience. My mum, is 88 and recovering from a stroke. She is housebound, reliant on private care visits to help her manage at home. I’m Mark, her only son. Luckily my circumstances allow me to be a regular carer for Mum since her stroke. Actually, what takes most of my time is not the hands-on care as such but the constant medical coordination, communication and fact finding I have to undertake on Mum’s behalf. At times this can be frustrating and very upsetting especially when I’ve spent my working life helping to resolve very similar issues that exist within many organisations and then discovering I’m powerless to do anything to improve matters for her.

It was mid March 2013 when I took the call from Mum’s day time care provider.

“Mark, we found your Mum this morning on the floor in the bathroom, she’s ok but keeps counting from one to five, is that normal?”

“We’ve called an ambulance because the carer can’t stand her up and she needs to be checked over. We’ll call you back when we know more”.

I was in North London at the time and just about to head into a meeting for an hour. I left my phone on after concluding that she was in safe hands and decided to head straight back home when I’d finished. Besides, Mum falling over had become a bit of a regular occurrence and I was getting used to the calls and the events that followed.

Just as I was heading to Queen’s Park tube station, and about to call for an update, my phone rang. It was a paramedic who explained that they were going to take Olive to hospital for tests. My fears were quickly confirmed when I arrived at the hospital an hour or so later to find Mum on the stroke ward, counting from one to five.

Mum is out of hospital now and at home. Hit hard by the stroke she has a weakened right side, her mobility is very poor, and her short term memory and dexterity massively impacted. She has two care visits a day, mornings and afternoons, with an evening visit by me to prompt medication and make sure she’s ready for bed.
I used to believe that medical care for the elderly was a well trodden path and Mum would have coordinated medical support at home, organised by her GP. I don’t believe this anymore. She hardly ever sees her GP; we seem to have more contact with the surgery receptionists and administrators than we do with a Doctor.

Thankfully, and by chance, I was introduced to a Community Matron at the start of 2013. Without her counsel and assistance I don’t know where we’d be now. She is the only medical professional who has a grasp of all Mum’s ailments, is willing to talk to me and will regularly visit Mum at home. However, even she sometimes struggles to understand who is doing what and where responsibilities lie for Mum’s health care.

Mum also has a small collection of age related conditions: osteoporosis, anaemia, spondylitis, hypertension, a hiatus hernia, impaired kidney function and an over active parathyroid gland. This gland, secretes a hormone that manages the levels of calcium in the body. As a result she needs to take more medication twice a day and have regular blood tests to monitor her calcium levels.

Mum hit the medical radar after her fall and her admission to hospital on Boxing Day 2012. Let me try and illustrate how Mum’s world has been turned upside down since then…

Mum’s GP rarely sees her. I recently took a call from the lead GP at the surgery asking me “why is your mother having all these blood tests”. The surgery seems to find it hard to read and act on letters received from hospital consultants and regularly allow Mum to run out of any new medication that wasn’t prescribed through the surgery. I often wonder what would happen If I didn’t get involved, would anyone at the surgery notice before it’s too late.

Following her stroke, and discharge from the district general hospital Mum was admitted to a community hospital to complete her recovery before going home. Mum now attends a post stroke clinic at fixed intervals to see her stroke Doctor. Three visits so far and each time she has seen by a different Doctor. The hospital have also assigned a Stroke Nurse to regularly visit mum at home. At her last visit they noted low blood pressure and subsequently requested Mum visit them for a blood test. The clinic appears to operate in isolation from the hospital consultants and GP. It’s been four weeks since Mum’s last visit and we’re still struggling to find out who is following up on her low blood pressure. Since Mum’s fall and admission to the district general hospital on Boxing Day 2012 she is seen regularly at a clinic for the elderly. Four visits so far and each time she has been seen by a different Doctor.

Having been diagnosed Mum does not have to return to see the surgical consultant again regarding her parathyroid gland; there is nothing the surgeon can do. The Consultant prescribed a drug called Cinacalcet to keep the gland in check and wrote to the GP requesting that regular blood tests are taken and calcium levels checked. Mum’s first course of tablets dispensed from the hospital soon ran out. When I contacted the GP’s surgery I found that the letter written to them by the consultant had been ignored.

Mum had stopped eating because she couldn’t swallow properly and feared her food wasn’t going down and she might choke. We managed to get the GP to visit Mum at home and he referred mum to see a gastro consultant who then request an endoscopy and ultrasound to see if anything was wrong. The endoscopy was clear but the ultrasound identified a possible mass on her pancreas, she now has to have a scan to help confirm what this is. At our last visit in September 2013 we discovered that her renal function was also declining and the consultant now wants to consider how Mum’s other conditions might be playing a contributory role. This is the first time in ten months that a Doctor has stepped forward and said that Mum is now her patient and she is taking responsibility. I had to hold back a tear.

After a chance introduction to the Community Matron we now have access to an Integrated Case Management Team. This team, particularly the Community Matron, tries to keep me informed and helps to make necessary referrals for Mum. In return I keep them informed of hospital visits and concerns I have that aren’t being dealt with. For example whilst the GP sent Mum for an endoscopy the Community Matron referred Mum to a Speech Therapist to see if she had a post stroke swallowing issue affecting her eating. The conclusion was that she had slight dysphagia (impaired swallow reflex) and some psychological issues caused by a fear that food would get stuck, or go down the wrong way, and she’d choke. The team then referred Mum for a home visit from a Nutritionist and between us we have created a home cooked soft food eating plan. If I hadn’t instigated this dialogue with the Community Matron then I fear Mum might not be with us now.

You’d be right to think that Mum is getting all the medical attention she could possibly need. I can’t argue with that because on the face of it she is. But there’s the saying isn’t there “too many cooks spoil the broth” and it couldn’t be more true for Mum over the last 10 months. Everyone has her best interests at heart but they don’t see the whole picture for her and certainly find it hard to communicate with one another and with me for that matter. They insist on communicating with Mum but she has great trouble remembering what has been discussed. Having attended many sessions with Mum I can see that she struggles to hear, and sometimes to understand what is being said to her and often will not answer the questions being asked. For example, I remember the Nutritionist asking “How is your diet Olive, are you eating well?” Mum replied “yes, all right”. The fact that mum had probably eaten the equivalent of two slices of toast in 14 days wasn’t mentioned. Luckily, and by chance, I was with Mum during that particular visit.

Something has to change

I’ve really only skimmed the surface of events over the last 10 months but I’m sure you can see what a difficult time this has been for a confused and frail elderly lady. Visit after visit to the hospital each causing huge anxiety leading up to the arrival of the ambulance, needle after needle taking blood and multiple Doctors that can’t be heard or easily understood. For me this is further compounded by no clear medical lead, and the apparent inability Doctors have to share blood test results and patient notes between hospitals. The cost of all this inefficiency, but it must be huge.

The Integrated Care Team (also called Community Treatment Team) certainly has the potential to provide holistic patient care for the elderly. Unfortunately, the team doesn’t appear to have the necessary authority to bang heads together and deal with what I can only assume are professional egos unwilling to let go and delegate responsibility for fear of losing control, or simply can’t because they are hamstrung by policy, procedure and systems. Until a bridge is built between between the community care services and the medical profession I’m afraid nothing’s going to change. Perhaps work is already being done behind the scenes but it’s certainly not present in our field of vision.

Have you heard the phrase “if it ain’t broke don’t fix it”?

Well, something’s broken and certainly needs fixing; elderly people deserve more

Mark Gray blogs at
http://markgray64.wordpress.com/

Care to Share Magazine volume 1 issue 1

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6 thoughts on “Care in the community by Mark Gray

  1. Hi Mark,

    As you know there’s such a lot in this article. Sometimes telling the story is the most powerful way to make a point. As I read it I had a recurring image of your Mum in various situations – it had a very powerful impact upon me.

    It’s interesting (if that’s the right word) how one person can have so many services involved and yet have such an unhappy experience of care. Perhaps frustrating might be a better word.

    It’ll be interesting to see what others have to say about your Mum’s story.

    Cheers,

    Stuart

  2. Hi Mark, a touching and well-written piece, but unfortunately all too familiar a scenario! I’ve had similar experiences with older family members with dementia and / or multiple health issues. I’m hoping to write a bit about that for @whoseshoes blog soon 🙂

    I also worked for the University of Bristol Norah Fry Research Centre Confidential Inquiry into the deaths of people with learning disabilities (here’s a link to the Executive Summary, which includes the recommendations: http://www.bris.ac.uk/cipold/finalreportexecsum.pdf ). You will see many of the recommendations could apply to all vulnerable adults with complex health needs, including having a named healthcare coordinator and patient held records. If we can get these adopted, there will be a higher chance of them being considered for ALL vulnerable adults!

    • It seems that multi-disciplinary teams vary across the country and between specialties too. Having worked all over UK I’ve seen some truly excellent integration and co-ordination but also, as your story illustrates, some less desirable scenarios as well.

  3. Hi Mark,

    Not sure you’ll get this reply as I’m a bit late to the party. I’m a student nurse in a very similar position to the position you were (or are still), in. I have a parent with very complex physical and mental health needs that requires my support and input on regular basis. My other parent also has care needs that are mostly met by me, but not exclusively. I live in close proximity to them. The points that especially stand out in your very well written piece are, and I’ve quoted you below then –> my response

    “At times this can be frustrating and very upsetting especially when I’ve spent my working life helping to resolve very similar issues that exist within many organisations and then discovering I’m powerless to do anything to improve matters for her”
    –> I can relate to this 101%, although I get great variation between feeling like I’m getting control and influencing things (for the better) to being back at square one and quite powerless. I think if it wasn’t for my own background in Cognitive Behaviour Therapy and one amazing friend who can relate to my situation and always seems to say the right thing at the right time, I’d be much more emotionally disturbed about the situation as I am (or can be). As I am sure you can relate to (or I assume you can relate to!), it’s easy to lose your cool or want to lose your cool if you think/feel an organisation is under-performing with the service/care they are giving your relative (that’s a very mild way of putting it!!!). I’m fortunate to have had training in CBT, used CBT myself and have this wonderful mate plus an ex work colleague (and good friend) who is a therapist to fall back on. Many others out there in similar situations would not have such resources at their disposal to help cope….

    “This is the first time in ten months that a Doctor has stepped forward and said that Mum is now her patient and she is taking responsibility. I had to hold back a tear.”
    –> On a less positive note I am still waiting for my moment as you describe above. I’ve accepted that ONE consultant / doctor/ nurse or support-worker may not appear for me (and the family) but I hold out hope an integrated approach will one day show better signs of efficiency, compassion, empathy, communication with family and joined-up working than it has done to this day…..(not necessarily in that order!)..

    “This is the first time in ten months that a Doctor has stepped forward and said that Mum is now her patient and she is taking responsibility. I had to hold back a tear.”
    –> On a more positive note. I hope that when I am a practicing registered mental health nurse there are times when I am THAT person that brings that sense of relief to a family member that you were provided with in your interaction with that Doctor who “stepped forward”. That’s the kind of NHS staff I want to be! 🙂

    I can tell by your attention to detail you have done a massive amount of work to ensure your mum can have her needs met. She cannot do this for herself of course. Sounds like you are a great son AND practitioner!!

    Best wishes

    Alex

    • Things have been more positive in my situation over the last few days (in relation to my above posting). I posted the above on 05/01/14 and today is 09/01/14.

      What I was yearning for has happened, (or shows signs of happening, trying not to jinx it!!!). We have an MDT (Multi-disciplinary team) discharge planning meeting tomorrow morning. After getting a call earlier this week from the ward (first time they have phoned me in 4-weeks, since her admission) kindly informing me she was to be discharged the next day (urmmm, what happened to the discharge planning and family liaison for this vulnerable person with very complex physical and mental health conditions?) –> I exaggerate slightly as they DID hand over to a community team and arrange for my mum to be seen at home by this community team mum is known to the following day, but just relying on this one community team who specialise in one issue (when mum has multiply complex needs) was not nearly enough and it was like doing 20% of the job they should do for a discharge like this, (my opinion, but shared by others). It was also very unfair to my dad who is disabled himself and lives alone with mum. I would have said 70% would be the bare minimum I expected form the ward at discharge (in terms of effort) and I got 20%.

      I know it sounds something good that they arranged a home visit from a community team for the day after she get’s home, but if I told you all the issues at play, most people would agree it was a poor effort on the wards part. Said community team when I called them agreed with me that more needed doing from the ward and said community team confirmed to me they were not in a position to adequately (or even remotely) meet my mums needs. And what really irks me at times like this, is that it wouldn’t take a health professional to realise this!!!! “The Man At The Bus Stop” as someone once said to me (as a phrase) i.e. someone with no healthcare experience or expertise in the field WOULD HAVE CLOCKED it was a sloppy (unsafe?) outcome for mum & dad…….

      I ended up making and receiving a barrage of phone calls that day that were ultimately positive. This was refreshing as I was gearing myself up for a bit of a battle. I spoke to a speech & language therapist, a psychiatric liaison doctor, mum’s named nurse for the day the ward deputy manager and i also spoke to the community team my mum will have on-going support from (at least initially). I had to re-arrange a days work-related I.T training to do all this. It was worth it. It was just sheer luck I was not due on placement this day (on my ward). It would have been tough working with my blood boiling and frantically trying to phone all and sundry to delay the discharge. It was up to me, as the unofficial care-coordinator to sort stuff out this day!!!!! TO GET THINGS DONE!!!! All you other carers out there, you know what I mean by the term “unofficial care-coordinator”.

      If you think “why would you want to keep your mum on a general medical ward for any longer than necessary when she could be at home” I can easily justify that but won’t go into detail here. Also, if you ponder “could some of this been avoided by chasing up the ward more vigorously to preempt a shoddy discharge”, I tried that. Could have tried harder, but I did try. As a concerned family member, phone calls were made, e-mails were sent, messages were left with nurses when I visited. I reached out, tried to be heard, wasn’t really heard at all!!!!!

      That day the ward phoned to say “hey, it’s discharge time for your mum” I thought “here we go again”………. another period of shoddy after-care and poor communications, followed up by a relapse/crisis and/or near death experience for my mum again”. I had all these negative thoughts and assumptions about how the day would pan out. I was proved WRONG and am really happy i was wrong!!!!!!

      The upshot is what I posted on Twitter tonight (see below)

      Ward agreed to delay mums discharge this week and finally have a proper joined up sit down meet after I voiced my concerns loudly about continued lack of aftercare +also dads needs as a carer.I felt listened 2 and attended 2 as a worried relative So big thanx 2 @NorthMidNHS @BEHMHTNHS @Lancemccarthy @Ollietre want 2 say what ward & community team but confidentiality 4 mum #BigUpTheNHS

      Alex

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