A Vicious Circle

Thinking as always:

It always amazes me, how your mind can just wonder off without you even taking it to the place where you’re unconscious thoughts are busy trying to make sense of things.  And I have certainly spent a lot of time recently, trying to make sense of things!

I recently addressed my thoughts on the events that have filled my life for the past 15 months, all related to caring for my dad, as you know!

I’ve been giving a lot of thought to the recovery process and how I have been encouraging my dad to eat more, eat little and often, and drink plenty of fluids. Up to now, this has been working and the additional information I always provide on a white board in my dads kitchen has given him prompts and reminders.

This strategy had potential and reasoning, but somehow it doesn’t seem to be working now due to a number of things.

Why?

  1. My dad suffers from memory loss (does he just forget to eat)
  2. My dad has little or, at times, no appetite (the reason I make sure he eats with me at every opportunity)
  3. My dad has no sense of smell (impossible to prompt interest when cooking food for him)
  4. My dad has never been a big eater (has always ate small portions, and ate when he was hungry)
  5. My dad is on multiple doses of medication (this alone can result in loss of appetite, taste changes etc. . )
  6. My dad has Parkinson’s disease (therefore swallowing can be an issue as the disease progresses)

Therefore while I am encouraging my dad to eat little and often, I am now looking at the possibility that swallowing may have become an issue, although dad isn’t telling me this.

I have noticed him reach for his glass of water at mealtimes more often, and ive noticed he has been coughing in short spells when eating, even showing a choking reflux on rare occasions.

I have had to provide foods that are easy for him to swallow, while still considering the vitamins he needs.  I’ve come to realise the many symptoms of Parkinson’s are different for each person, suffering from different episodes that may come along at anytime, and these may now be showing in my dads condition.

So, after considering all of the food options I introduced 12 months ago, while my dad recovered from his heart attack, and the addition of energy drinks (as recommended by the health professionals) I now find myself taking a few steps back and looking at this as the next option again. . Hence the term I have used for this post

The definition of ‘A Vicious Circle:

” A situation in which the apparent solution of one problem in a chain of circumstances creates a new problem and increases the difficulty of solving the original problem”

Interesting definition!

I don’t want to see my dad lose anymore weight, he has always been a slim man, but losing weight over the last year while recovering has shown on him.

I think this time it may be worth me speaking to the experts, the dietitians to get some help and advice with the next stage of this journey.

Just another small step to take, and one I am sure we can deal with!

 

 

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Time to Change/Time to Talk Day

Time To Change/Time to Talk Day

We all need to help change the stigma and discrimination experienced by people suffering from ‘Mental Health’ problems.  Any one of us could suffer from a mental health issue at any point in our life.

http://www.time-to-change.org.uk/timetotalkday-log-your-conversation

There needs to be more information, education and open conversations to change the stigma that is attached to mental health issues.   There are people who still hear the words ‘Mental Health’ and immediately think ‘Crazy’ a word that has been attached to it for so long. . I might be taking a risk saying this, but I still hear this even today!

Having worked in the NHS for 28 years (non-clinical roles) starting my career in an Acute Trust, it wasn’t until I started working in a Mental Health Trust in 2004, that I became more aware of the bigger picture of health issues, and the multidisciplinary services they provide to the community.

When I began writing my blog it was with the intention of recording the journey my dad and I had taken since he suffered a heart attack.  That was 10 months ago and now, having followed a number of paths to pursue the right care and support that my dad required, due to a number of health issues identified, I find myself liaising with a service that sits within the ‘Mental Health’ Trust.

‘Later Life and Memory Services’ (LLAMS) 

One of my earlier posts described how I was noticing small memory lapses and episodes of confusion with my dad.  These episodes did not happen every day, and some I just put down to his age (83) I even laughed with him about the things I forget, that he can easily remind me of sometimes. However, the time came to address these episodes as I am aware the earlier a health issue is identified (such as Dementia or Alzheimer’s, the earlier treatment or medication can be offered)

My last post (Referral to the Memory Clinic) described the initial referral to this service, and some of the issues regarding ‘Signposting’ (yes, as you know I have experienced a number of issues with signposting to these vital services, which is why it has become a bit of a bone of contention)

http://www.5boroughspartnership.nhs.uk/base-page.aspx?ID=4852

Memory Clinic Referral:

Dad’s referral to the ‘Memory Clinic’ a service provided by the Mental Health NHS Trust, has resulted in two home assessments, a number of questionnaires, health and wellbeing checks and a referral for a brain scan, prior to an appointment with his assigned Consultant Psychiatrist.

Dad has two pathways to follow this week:

  1. Follow up appointment with Cardiology (Acute NHS Trust – Post heart attack review)
  2. Brain Scan with Radiology (Post referral from Mental Health Services)

Time To Change/Time to Talk Day:

You never know when you will require the services of a Mental Health Trust – It’s time to see an end to the ‘Stigma’ 

My next post will report on both outcomes, and the next step on this journey.

 

 

 

The Memory Clinic (they required a reminder)

Pardon the pun I couldn’t resist!

A referral to the ‘Memory Clinic’ that was what my dad’s GP recommended after he assessed my dad with a questionnaire, following a discussion about his memory lapses over the last few months.

Unfortunately this referral has taken so long that even I was beginning to think I had imagined it!

After numerous conversations with the GP surgery who suggested I contact the service directly, I found myself being passed from one person to another without getting anywhere. I was eventually directed back to my GP only to be told the referral had not been sent through to the memory clinic, but they would make sure it was sent ASAP.

This whole journey had taken 4 months from the original conversation my dad and I had had with the GP in September to the eventual home assessment appointment which took place in December.

With every step of my dad’s patient journey, we have come across issues with referrals and follow up from one service to another, and this leaves me wondering how some elderly patients cope when they have nobody to follow these things up for them, as my dad has with me!

It is so frustrating knowing these valuable services are out there, but it takes just one step to be out of place to send the whole process out of sync and cause delays for patients.

Having the referral acknowledged and the home assessment finally arranged, I was happy to see dad was now on the pathway. We were informed that dad would have another assessment, and would be assigned a practitioner and a consultant. We were also informed that dad would require blood tests and a CT Scan.

A few days later I received a phone call confirming dad’s next home visit, but to my dismay nobody arrived for the home visit, and after waiting over half an hour I decided to call the memory clinic to find out if dad was on the list for the assessment.

To my surprise, I was told they had no record of this appointment and could not find any information as to who was supposed to be visiting my dad, I gave the details of the call I had received confirming the appointment, but still I could not get any clarification on who was assigned the appointment.

After about half an hour I received a phone call from the practitioner, who was supposed to be visiting my dad, they informed me that although an appointment was booked for my dad, it had not been assigned to the practitioners diary (somebody had forgotten to inform them) I did find this quite funny really, considering it was the memory clinic, and here I was following up yet another appointment. The practitioner apologised and asked if she could still visit my dad within the hour, to which we agreed.

I have to say when she arrived she was very apologetic, and we did see the funny side of this, but again it leaves me wondering how some people with nobody to help them follow these things up cope with these misunderstandings.

I know that if my dad had been on his own waiting for this assessment, he would not have remembered who to contact when they didn’t turn up, and he would have just accepted this.

Needless to say, the assessment went well, we were informed of the next process in his pathway of care, and I am pleased to say everything else has fell into place with the follow up appointment for the CT Scan next week, and an appointment with the consultant next month.

However, we are still waiting for news on the Parkinson’s Therapy Group, this has still not been confirmed considering I was informed that the earlier my dad starts on this programme the better. Almost 5 months into his diagnosis and it’s me who is providing the therapy and assisting my dad with limited information on his condition, and how best to support him.

Hopefully my next post will be able to report that he has started on a programme of therapy!

 

Another Step On The Journey

Parkinson’s Disease:

It’s 3 months since my dad was diagnosed with Parkinson’s disease, and so we set off on yet another journey of medication and assessments. In my last post I mentioned that I had been informed about a therapy group for newly diagnosed patients with PD but I have yet to discover where this fits into my dad’s treatment. My first signpost was his GP, this is who I was directed to in the first instance but unfortunately after a few discussions with the GP receptionist I felt I was no further in finding out if my dad could be referred to this group.

A few days later my dad received a letter from the GP informing him that he had already been assigned a PD Nurse specialist, and that was who he would discuss his condition with. However, I had been told by a community health practitioner that this was not the same as being referred to the therapy group, and that every one who is diagnosed with PD is assigned a PD Nurse. So here we are again, with very good information and the assurance that there is a PD therapy group out there somewhere, but we have no direction on the access to this group.

Why is signposting to these specialised areas so difficult, and why do patients not get the same pathway of care, when these services are obviously crucial to their wellbeing?

Early this month I took my dad to see the PD nurse specialist at out local hospitals neurology department, this was a pleasant meeting the specialist was very patient with my dad, but didn’t have any of his recent medical history. I found myself going through the whole journey again, discussing dad’s blackouts, his heart attack, his hospital procedures and medication, as well as the care and assessment that had taken place over the last 9 months. I am so glad I was able to accompany my dad to his appointment, otherwise none of his medical history would have been discussed, due to my dad’s condition, his memory lapses, and his understanding of what he has been through and how this is all relevant when he speaks with new clinical or medical staff.

I always give my dad the time to answer everything for himself, but it’s at this point that I realise just how much he forgets, and cannot give a true picture of everything that is important in these assessments. This is where I then join in the conversation and fill in the gaps, so the true picture of his health is presented.

During my dad’s assessment with the PD specialist, I asked about the PD therapy group, but it seemed she did not know about this, and proceeded to ask me what I understood about it! I was very disappointed at this lack of information but proceeded to inform her of what I had been told by the community health practitioner. I gave her the name of the person who I had been speaking to about this, and she informed me that she would copy her in on the report, and make sure an email was sent to this person, who would probably get in touch with my dad to invite him to the therapy group.

Another example that signposting to these vital services is just not working, we have some brilliant services out there in the community but yet not everyone who needs access to them has the information they require.

Who is responsible for signposting?
Who is responsible for making sure the pathway is correct?
Who do we hold accountable for the delay in patients care?

I have been informed that the PD therapy group is available for newly diagnosed patients of PD as they provide essential support and advice on a number of things that patients are now experiencing such as:

Medication (and side effects)
Balance
Walking
Eating
Swallowing
Retraining and reassessing their environment.

I am hoping we get a referral to this therapy group, as I don’t know enough about PD at present, and I am trying to take in so much new information as well as discussing the condition with my dad to help him to identify these changes in his condition.

In the meantime after a recent assessment of his state of mind after some evidence of memory lapses and forgetfulness my dad has been referred to the memory clinic. This is another service provided by community health. He has been showing a number of changes with his recall, short-term & long-term memory, and I have been worrying just how much this is now deteriorating, or if PD will have a further effect on his wellbeing.

Hopefully in my next post I will be able to discuss both options mentioned above, the PD therapy group and the memory clinic assessments.