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Posts tagged ‘pain control’

How (not) to chose a carer – Part 1

Finding the right carer can be like crossing a minefield

I have needed carers to help me for over 10 years now and these are some of the things I’ve learnt.

If you chose to use an Agency you will be able to meet with a number of different companies to see which one is able to best meet your needs.

However, if your care is organised by Social Workers, you or you family will have little choice as to which Agency provides your care needs as this is decided for you by your LA (Local Authority). But most importantly, you do still have a choice over who comes into your home.

If you find a carer disrespectful or rude or they do not understand your needs or provide poor care, you have a right to refuse to have that carer back again.

Because care work is so poorly paid a high percentage of agency carers are from outside the UK. My experience is that many do not either speak or understand sufficient English to be able to meet my needs. And if I’m struggling to work with them, heaven help anyone who is deaf or has impaired vision or speech!

I have spent almost all of my working life employing Nurses and carers from ethnically diverse backgrounds – so I’m well used to making sure care staff can be easily understood by their colleagues and the residents they care for. Also I often had a good number of applicants for each job. However Agencies today are usually so pressured to provide a service that they take on staff whose English is not as good as it should be.

Carers are in our homes for a short fixed time only and they always seem to be rushing to get to their next client. An Agency I used recently sent me a carer who was good – but every time she got delayed at a previous client’s house she missed my visit – leaving me with no breakfast and unable to take the pills I need to have with food. My pain levels increased dramatically, impacting on the rest of my day. After 3 mornings of this – I had no alternative but to ask the agency not to send me that carer again and made the decision to go back to directly employing someone.

The example I’ve just used is fairly extreme, but often it’s been really simple things that carers have struggled with – not burning food – making sure food is cooked properly & served on a hot plate or bowl. Making sure I have the right cutlery. Washing up is a very basic task, but yet I’ve often found that I’ve need to check that dishes and cutlery are washed properly.

I’ve had carers who have refused to do any domestic work, ie cleaning or hoovering, even if that has been part of the work they are contracted to do. I’ve had a carer pull a Dyson so roughly that she has broken the hose – and then denied she had done so – the agency refused to take responsibility for the damage, and whilst I was still arguing with their insurers – the agency lost the contact with the borough I lived in and went bust – so I ended up very out of pocket.

For a time one London Borough where I lived paid a company to undertake shopping at Tesco’s for clients. For the 3 months I used them I don’t think I ever got the right order! One day when my flat front door and step were being painted the delivery guy walked onto the step and left a large black boot print on my carpet and slammed my front door so hard he made a hole in the wall of my hall! As soon as I realised I called the agency & the Council – the agency were less than helpful and I only got a very small settlement.

There are good agency carers, but I no know it can take time for me to find the carer who can best meet my needs. I have used 6 or 7 agencies so far and only one sent me a great carer from the outset, with others I went though at between 5 or 8 people to get someone who was able to care for me properly.

This is the first of two blog posts on this topic.

Part 2 will follow shortly.

A Trip to the Countryside

 

Sadly I didn’t get to ride the horses!

As readers of my blog will know I’ve had several eye surgeries in the last few years. This year I wanted to be free from hospitals and operations. However, my body had other ideas! 

Whilst my mobility is compromised by both my spinal arthritis and my poor lung function, I can usually stand and walk a few steps without too much pain. I take regular analgesia and my pain levels are usually well managed. But my balance is poor and a few days after a fall in September last year, I experienced a severe pain in my right leg, I was unable to put it to the ground without excruciating pain and soon I had the pain when I was sitting or lying down.

Fortunately I was seeing a Rheumatologist as a follow up after a steroid injection into my left wrist (for pain due to having to try and carry trays of from my kitchen), this was also remedied by getting extra care hours, so I didn’t need to carry stuff. When I went to what should have been my discharge appointment, the Consultant agreed to send me for an MRI. I waited in vain for the appointment, but he was a locum consultant and hadn’t done the referral correctly. Several phone calls later I finally got my scan. When the result came back it was as I had expected, I had a trapped nerve. However this was complicated by a cyst between two of my lower vertebrae L4/L5. 

According to what I understand is now NHS standard protocol, the next step should have been to refer me to the local MSK (Musculo-Skeletal) Triage Team. This is a group of specially trained physiotherapists who decide on treatment according to various treatment pathways. See here for an example of how this works.

I knew that the only way my pain would be resolved would be by surgery and there was no way I wanted a referral to my local hospital. The last time I was an inpatient there following cancer surgery I got a hospital acquired infection which caused wound healing failure and meant that my shoulder wound became so deep that my scapular was visible. The wound took over 15 months to heal. I also knew that weeks waiting for appointments to professionals who couldn’t help me would have a negative impact on my health and well being. More concerning, I had also began to experience peripheral neuropathy, ie numbness in my feet and I knew I needed treatment quickly. This also was affecting my balance, which made any walking really scary. 

One of the advantages of working as a Nurse (my former profession) is that you get to know an awful lot of medics, one in particular came to mind. She had worked for many years at RNOH in Stanmore, a world renowned orthopaedic hospital that specialises in complex cases. I was well aware that I would qualify for treatment there and discovered that I could get referred directly by my Rheumatologist. That should have been a simple letter and the sending of my MRI scan, but in the way of many NHS referrals there were several hiccups, letters not being done, the scan getting lost between the two hospitals, in all it took 3 months before I was finally seen at a wonderful state of the art building in central London.

As soon as I met my consultant I knew I had the best person possible. I had a scan just 30 minutes before I saw him, I had my medical history taken by his Registrar and underwent a rather painful examination, (it took me three days of complete bedrest to recover) the Registrar was very apologetic, but I knew he needed to examine me fully. Then I got to meet my consultant, he immediately pulled the scan up on his computer screen, and took both me and my partner Eve through the images so I could understand exactly what had happened and why I was in so much pain. 

We agreed a treatment plan, I was to be admitted as a day-case so that my cyst could be aspirated to see if that would lessen my symptoms, this would be done by guided imagery and I would also be put on the waiting list for full spinal surgery. 

I quickly got the appointment for my day surgery. I was admitted into a lovely private room, and was taken down to the imaging department where I was placed on my front, given some wonderful short acting anaesthetic and the next thing I knew I was being wheeled back to my room. A few hours later my lovely friend drove us back home. Over the next few days I noticed some reduction in my pain, but that wasn’t sustained, so I was thrilled when I got a surgery date for four weeks later. The date could not come soon enough!

As preparation for my surgery and to prevent MRSA I had to use special body and hair wash, nose ointment and some ghastly flavoured mouthwash! I decided to drive myself to the hospital as there was lots of available car parking and I knew I had friends who could drive me home again. I was admitted to a main ward and promised a side ward after my operation. I had previously been sexually assaulted when I was on an NHS ward by a male patient and am now very nervous of being in mixed sex wards. Whilst there were separate male and female bays, they were adjacent and I did not feel safe.  

The staff were incredibly understanding of this, and one of the Senior Nurses, who was on the hospital safeguarding panel, asked if she could talk about my situation, anonymously, to the panel. I agreed and I hope the way staff supported me would help others who had may have had similar experiences.  

The RNOH could be described as somewhat ramshackle. It is set in 112 acres of green belt to the north of London. It was first built as a hospital just before the WW1 when it became an emergency hospital for the military and also began to house disabled soldiers in 1918. In the 1930’s the hospital became known as the leading centre for the treatment of Polio and TB. Come WW2, lots of Nissan huts were erected to house civilian patients and war casualties. Many of those huts are still being used, with long interconnecting weatherproofed corridors. Some of the corridors are really steep due to the contours of the surrounding land. When I went to theatre my bed was pulled on an electric truck operated by a porter, even the wheelchairs the porters use have electrical assistance. I had been well advised not to have my surgery there in the winter. It looks as if the latest lot of plans for redeveloping the hospital may finally come to fruition, I really do hope so.

Despite the difficulties of the building, everywhere was spotlessly clean and the care I received was wonderful. Firstly the ward I was on had enough staff to care for the patients, a rarity in today’s NHS. All the staff I met treated me well, they understood and accepted my limitations and gave me good personal care. Pain relief was offered regularly and every nurse who came into my room checked my pain score. There were no issues about giving me my own top-up Diazepam for the muscle cramps I sometimes get, in other hospitals I’ve had major difficulties about getting it prescribed and given. The whole ethos of the ward was that everyone cared for the patients. Domestic staff as well as Nurses of all grades were friendly and professional. The one downsidewas the food. The menu was well designed, but the food was not good quality and it was very repetitive, with the same choices each day. I was glad of the extra treats I had taken with me. 

My surgery went exactly to plan, although it took longer than expected due to the difficulty of removing all of the cyst. I spent my first post-operative night in HDU, which is routine for RNOH surgical patients. My previous HDU experience had not been good, to say the least, so I was slightly apprehensive. But I need not have been, my care was great, I was given enough analgesia, and I did manage to get some sleep. The next day I was back on the ward and in my lovely side room. Although the room was small, I always had easy access to my wheelchair, even though staff had to bring it from another area on the ward, and then had to manoeuvre my bed & open both doors. I never had to wait to use the loo and staff were always on hand to support me when moving from bed to chair. 

I saw both Physiotherapists and Occupational Therapists. The Physio was great, and she didn’t push me to do things I couldn’t do, again a new experience, I’ve previously felt very bullied by some Physios. Even the Social Worker came to try and get my Local Authority to sort out my Care Package, this will be the subject of another blog post.

My partner came to see me each day and our Rabbi came to visit too, which was wonderful. By 5 days post-op I was ready to go home. Our Rabbi’s husband came with my partner to drive my car home, the journey was not too painful, other than going over the dreaded speed bumps along our road. I was really glad to come home and see my lovely cats, who seemed pleased to see me. But my biggest treat was a takeaway from our favourite Chinese accompanied by a large glass of wine. Desert was some scrumptious champagne truffles Eve had brought for me.

I’m writing this two days later, my pain levels are reducing, I’ve even reduced my pain killers, but I still can’t spend much time in my wheelchair. But it’s so great to be home. 

 

Patches for Pain

I started taking regular pain killers many years ago, as it was the only way I could control the pain that wrecks my body.

I fought against being dependant on painkillers for a long time, but eventually had to come to terms with the fact that the only way I could control this beast was by regular analgesia.

I tried acupuncture, relaxation, mediation, even cannabis (kindly given to me by the boyfriend of my then flat-mate) but nothing worked well enough to reduce my chronic pain. Eventually my GP suggested I attend a pain clinic, the consultant was very good, recognising my professional background and knowledge, he felt that the only option I had was to try morphine patches.

Deep down, I knew that was what he would tell me. I hoped he might be able to give me details of research outcomes of long term use – I was only in my early 50s at that time – but none was available. Despite this, I decided I would try the patches. I’m really glad I did. They really have made a big difference to my daily life.

The morphine has helped not only with my pain, but also with muscle stiffness. It is not a cure all, I still get pain if I stand for more than a few minutes, try to lift anything heavy or sit in my wheelchair for more than a couple of hours. At times I need to a take top-up Tramadol for break-through pain, especially in cold or damp weather but for much of my day my pain is bearable.

However, I’ve learnt four things that I want to share as I hope they may help others

Always have a spare patch…….

and carry it with you at ALL times. I learnt this the hard way. About a year after I started using morphine patches, I was enjoying a day out with friends when I slowly became away of my pain increasing and feeling very strange. When I went to the loo, I discovered to my horror that my patch was almost off and that it had folded over and stuck to itself!

There was no way I could unstick it. I was several miles from home, and didn’t feel safe to drive. Luckily one of my friends, another nurse, was able to drive me home. I can’t remember much of the journey as I felt a sense of unreality and as if I was going in and out of a series of tunnels.

Once I was home I quickly put on a new patch and climbed into bed, still feeling very out of sorts. My friend told me that I was experiencing morphine withdrawal and gave me much much reassurance that once the new patch had started to work it would soon recover, she also advised me to take 10mg Valium (I have a prescription for occasional use if I get severe muscle spasm in my back) to ensure I slept whilst the new patch was getting into my system.

The next morning I work up feeling fine, and much wiser.

There is now always a spare patch in my bag!

Take spare tape as well

Occasionally a patch came can become unstuck at the edges. Sometimes this can happen if skin is not completely dry when the patch is applied, or if I’m wearing really tight trousers which rub at the patch and cause it to come loose. Just using a strip of tape, can save the day and help the patch to re-attach to my skin. My tape of choice is 3M Transpore, as I find it the least irritant on my sensitive skin.

I also find 3M Transpore great if I’m having a blood test as I’m often allergic to the tape the venepuncturist uses. Supplying my own reduces my chance of skin reaction.

My Wipe is great for removing sticky residue

Once a patch is removed there is always a ‘tide-mark’ left, just as there is with a ordinary sticking plaster. I tried various acetone based removers but they all seemed to cause a skin reaction. Then I found My Wipe on Amazon, it’s it easily removes the sticky residue and doesn’t unduly irritate my skin.

Use Derma Cream to reduce skin redness

This honey based cream is really great, it has many other uses, including helping with wound healing and infection. Again buyable from Amazon

I usually apply it directly after using a My Wipe and it substantially reduces redness and inflammation.

Beware though, it is quite sticky, and washing or using a baby wipe to clean your hands afterwards is essential.

 

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