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Caring for life and limb

In the records of Dáil parliamentary questions, a search for ‘prosthesis’ brings up a number of results and almost all describe the same problem: delays.

Delays for new prosthesis. Delays for replacement ones.

Minister Varadkar’s predecessor, Dr James Reilly, told the Dáil in 2012 that the HSE had “taken corrective action to address the issue of waiting times for new and replacement prostheses (in Cork and Kerry) and have succeeded in making significant progress in reducing the waiting times for prostheses”. However, a year later, an article in The Sunday Business Post reported that lengthy “delays in sanctioning prostheses for amputees have developed, with patients in parts of the country waiting up to 18 months for HSE approval”.

In 2012, patient group Amputee Ireland condemned the provision of services to amputees as “fragmented and inefficient,” claiming that some of its more than 4,500 members were waiting for up to a year for care.

“The current sanctioning approach is a continued source of worry, anxiety and concern for amputees and a source of complaints to the charity. Our members experience different processes, procedures and sanctioning timelines,” explained Mr Michael McWilliam of Amputee Ireland.

He said at the time that these delays could range from 13 days in Donegal to 189 days in Wicklow.

“In many cases, delays of up to a year are experienced. For amputees, it is vital that delays and inconsistencies in the current system of sanctioning are improved and overcome.”

Two years later, these delays seem to be continuing.

Figures seen by the Medical Independent (MI) show that at the Independent Disablement Service (IDS) Ltd (a private specialist prosthetic/orthotics and footwear provider, located on the grounds of Cappagh Hospital), over a 22-month period the average time elapsing between the HSE receiving a quote for a prosthesis and a sanction being given was 61 days.

While 68 per cent receive sanction within eight weeks, 30 per cent get approval after that time. For these patients, 139 days was the average waiting time.

The other day, we received sanction for a child waiting since February for her ankle-foot orthosis. The budgets available to the local Health Boards sanctioning these are highly limited

However, a spokesperson for IDS Ltd said that these figures “only represent the clients we have seen and not the country or prosthetic services as a whole”.

In 2012, there was particular concern over the waiting times for children seeking a prosthesis, with one teen waiting six months for his prosthesis to be sanctioned.

According to the National Rehabilitation Hospital (NRH), as of 22 October 2014, three children were waiting for prosthesis: a four-year-old, a 10-year and one teen aged 17.

“All of the patients attending our services are life-long patients and are reviewed on a regular basis,” an NRH spokesperson tells MI. “For children and adolescents, the manufacture of prostheses starts prior to prior to receiving the sanction from the HSE to avoid delays in the prostheses being delivered.” The youngest of the patients required a lower limb, which was said to be in manufacture prior to HSE sanction. The 10-year-old also required a lower limb and the 17 year old required a specialised hand, which was due to be delivered at the end of October.

All of the children have now been fitted for prostheses, the hospital has confirmed.

At IDS Ltd, as of 3 December, there were six children awaiting prosthesis, with an average wait time of 36 days. However, it must be noted that these patients represent a very small percentage of patients at the hospitals. This was a point Mr Jan Ottosson, General Manager at IDS, was keen to stress.

“Currently, only six prosthetic jobs for children are pending sanction from the HSE,” explains Mr Ottosson. “It’s usually not a big waiting time for children, but in saying that, it would be preferable to have no waiting time for them.”

However, he agrees that funding remains an issue.

“Orthotics is perhaps as big an area, if not bigger, when it comes to the impact it has on the children and adults waiting on services and devices to be made available to them due to waiting for funding. The other day we received sanction for a child waiting since February for her ankle-foot orthosis. The budgets available to the local Health Boards sanctioning these are highly limited.

“I believe we have not yet succeeded in carrying our case to the correct people to get a proper understanding of the positive impact it will have if we provide the correct prosthetic and orthotic treatment, at the correct time.”

Unsurprisingly, most of the patients seen by the prosthetic service are adults. According to the NRH, 80 per cent of all causes of limb absence or amputation relate to vascular disease (57 per cent) and diabetes (23 per cent). Road traffic accidents account for one-in-10, while 4 per cent were as a result of cancer. Furthermore, the most common types of prosthesis are above the knee (48 per cent), followed closely by below the knee, at 44 per cent.

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Dr Jacqueline Stow

“It is the older age groups, people who are in their 60s and 70s, who are our main patients, usually with vascular disease and a mix of diabetes,” explains Dr Jacqueline Stow, a Consultant in Rehabilitative Medicine at the NRH.

“We do see slightly younger age groups, people starting from their 40s upwards, with diabetic foot-related problems that results in amputation as well.”

The rise in diabetes, she says, will see a corresponding increase “in the number of amputations unless, of course, we look at better and earlier management of diabetes to prevent these complications”.

“Most of our patients come from the vascular service, referred to us by a vascular surgeon; we also have patients that come from an orthopaedic source as well. They have different problems — patients who have had a bone tumour or traumatic loss. We then arrange a multidisciplinary assessment in our prosthetic clinic. We try and arrange that within six weeks after the amputation. We are expecting at that point to have the wound fully healed, and progress from there.

“Unfortunately, that isn’t always the case,” she says.

At the NRH clinic, there is a physiotherapist, occupational therapist, prosthetist, social worker, support psychologist and medical staff. Last year saw 97 inpatient admissions to the NRH Prosthetic Service for a variety of services — above-knee, below-knee, bilateral lower limb, upper limb, and hemipelvectomy (through hip and above knee), while there were 3,205 outpatient clinic attendances.

As of late November, there were seven patients on the waiting list for inpatient admission and the average waiting time is 32 days, with an average length of stay of 51 days.

Another issued raised by Amputee Ireland was the price of prosthesis. As reported by The Sunday Business Post in 2013, the association said that an increasing number of amputees were losing discretionary medical cards, forcing them to fund prostheses themselves.

“Adult amputees typically need to have their prostheses replaced every two or three years. A standard leg prosthesis can cost between €10,000 and €15,000. Michael McWilliam of Amputee Ireland said many amputees were unable to afford this cost on their own,” the article read.

Clearly, this is not an acceptable situation. The HSE was contacted for a comment but had not responded by the time of going to print. However, it is envisioned that many of these issues will be dealt with in the Executive’s review of the supply service of prosthetic and orthotic/specialised footwear to all HSE-funded patients.

The review was instigated in 2012 with the aim of providing “a choice of prosthetics and orthotics/specialised footwear for patients and clinicians whilst introducing best practice governance, transparency and cost-control in this service area”.

It is understood that this work will be completed within the first six months of this year.

””

Treatment

Despite logistical and structural problems, patients are guaranteed an excellent standard of care (see panel).

However, the treatment for patients requiring prosthesis is life-long and very complex, says Dr Stow. These range from skin breakdown, which prohibits the patient from wearing their limb and delaying rehabilitation, to weight fluctuations.

With this in mind, the NRH provides a nutrition and dietetics service to its patients to ensure they are eating healthily. Smoking also delays the healing process and thereby can delay the residual limb healing to the point where rehabilitation can begin. Consequently, the NRH provides a smoking cessation programme for patients who wish to give up the habit.

“On and off, people get a lot of skin problems because of the enclosed environment of the prosthesis, where there tends to be a build-up of sweat and friction and this may lead to eczema or abscesses,” says Dr Stow. “But with good attention to skin hygiene and if skin is allowed to breathe, a lot of our patients would seldom have skin problems.”

While infections “wouldn’t be a huge problem,” she adds it depends very much on whether the wounds have been completely healed.

“Sometimes months or years go by waiting for wounds to heal. In those cases, sometimes we look at alternative systems, where they can mobilise on a prosthesis with that wound open and exposed,” she explains. “But that depends on the rest of the patient — whether they can manage on that prosthesis.”

Even if the amputation and subsequent healing are successful, the way forward is not always clear. Simply put, not everyone will be a successful prosthesis recipient.

A small number of people will receive no benefit from a prosthesis and in fact it can make their lives more difficult. The initial assessment is carried out to establish the suitability of the patient and that depends on a whole host of factors.

“The higher-up the amputation is, the more energy and effort that person requires to walk with that prosthesis. If they have a bilateral amputation, that requires more energy, so we would examine the range in their joints and ability to mobilise. We need to see what strength and endurance the person has. For a unilateral amputation, we must look at, for example, what condition the remaining leg is in. If it has ulcers, then it’s not going to be able to take even more pressure. Finally, most importantly, do they have the cognitive capacity to put a leg on safely and use it correctly?”

Additional considerations such as vision, hand dexterity and comorbidities — like an underlying cardiac or respiratory disease — must also be examined.

“Finally, we look at the environment they live in,” Dr Stow says. “If someone is living alone, managing completely independently, they might not be assisted to walk in a therapeutic manner with a lot of supervision, rather than someone in a nursing home for example.

“Once we know how suitable they are, we see what type of prosthetic limb would suit them best. That depends on how active they are going to be. Someone pottering around their own home or someone who is looking to become a para-athlete; the activity level will depend on the type of components we pick,” she explains.

“We don’t always get it right — it’s trying to match the patient with the most appropriate prosthesis to be successful.”

Aside from the practicalities of matching, the management of phantom pain can be very challenging, with around 70 per cent of patients experiencing the phenomenon.

The provision of a prosthesis that makes you feel wholeness and completeness is a huge factor in improving somebody’s sense of wellbeing

“It can be very problematic for some; with other patients it can vary and depend on the individual as to how frequently it occurs. It tends to dissipate over time and the severity of the pain can be variable from individual-to-individual. Bilateral amputees or upper-limb amputees experience more phantom pain. Also, a lot of patients who have had a traumatic loss of a limb develop phantom pain, whereas vascular and diabetic patients might have less pain after the limb is gone.”

The treatment for phantom pain is as varied as the people it affects, Dr Stow outlines. “As well as the use of medications to reduce the transmission of those phantom sensations, we use our whole multidisciplinary team here to add to pain management. Our social work and psychology staff provide a counselling service. Adjusting to the loss of a limb, a loss of a part of themselves — that can feed into the experience of pain.

“Pain is so multi-factorial as well. Mirror box therapy has good results, where we try to trick the brain into thinking the limb is still there.”

Developments

Both Dr Stow and Mr Ottosson are positive about future developments, that could improve mobility and the quality of life for patients.

“There are lots of advances in prosthetic components,” says Dr Stow, “a lot of computerised componentry that helps control the movement of the limb through the gait cycle.

“There’s new osseous integration, which clips your prosthesis onto a metal implant in the bone. They are very experimental and come with significant risk. It’s not being done in this country at the moment, but it is new and may be possible into the future.”

Mr Ottosson is also excited about new developments in the materials and components that allow prostheses to better cope with environments such as water.

“That’s a choice that clients can now make. We could produce a prosthetic leg 15 years ago that could cope well in water, but then some of the components we would have used wouldn’t have been as appropriate, whereas now there is a bigger choice, offering further freedom,” he explains.

The difference that a prosthesis makes to a patient cannot be underestimated, says Dr Stow.

“I think for a lot of our patients, having been confined to a wheelchair and being provided with a prosthesis, this means they can get upright and start walking. For others, who are already upright and walking on a pair of crutches, to feel that you are able to walk normally, to have your hands free and be able to do things with your hands — that makes a huge difference to people’s lives.

“The provision of a prosthesis that makes you feel wholeness and completeness is a huge factor in improving somebody’s sense of wellbeing. It may help them to return to a previous home or to a previous type of occupation.”

The patient perspective from a bilateral amputee

I am a mechanical engineering student, an avid motorsports fan and I also enjoy a little bit of fishing here and there. I am a bilateral amputee (both limbs). If someone had asked me a year-and-a-half ago what my life was like, I probably would have told them it was fairly average. In December 2012, however, I was hit by a car while walking home, resulting in the amputation of both my legs through the knee. This was obviously a fairly major change to my life and involved lots of rehabilitation, hospitals and hard work to get back to my ‘normal’ life.

””
Alex Dainty during his rehabilitation

I was admitted to Hospital on 23 December 2012, and stayed there for the next 53 days, while having eight operations. I was discharged in February 2013, but due to having an open wound on my right leg from a failed skin graft, I had to spend the next two months at home waiting for the wound to heal before I could move on to the next step — rehabilitation. Those two months were spent eating a lot and doing Pilates in order to recover some of the weight and strength I had lost while in hospital.

I was due to arrive at the NRH in the last week of April 2013, and I will admit that I was a bit nervous beforehand.

It was a bit like your first day at a new school, where you are introduced to the teachers and other students. It soon became clear however that my nervousness was unnecessary; all of my nurses, doctors, physiotherapists, occupational therapists (OTs) and everyone else I met made me feel very at ease right away. This was to set the tone for the rest of my stay in the NRH; the staff were never any less than brilliant and while there was a serious attitude when there needed to be, most of the time I was treated like more of a friend than a patient. This was particularly appreciated in my case as, during my admission, I was the youngest amputee by some 25 years (at least).

It can be difficult to leave somewhere where you are looked after so much, and when the time came for me to leave the NRH and go back to the real world, understandably I was a bit nervous.

””

However, the OTs I worked with did an excellent job in preparing me to pick up my life where I left off and because of that, going back home was not as scary a prospect as it could have been. Since then, I have continued to adapt to my new life with my disability quite well; I don’t feel there is anything stopping me from doing everything I wanted to do before the accident.

If I had any advice for a new patient coming into the NRH, I would say to trust the staff and the people taking care of you. Not once did I think that the people I was working with were lacking in skill or knowledge — in fact it was very apparent that all the staff at the NRH are very good at what they do.

I would like to say a personal thank you to the NRH staff that helped me get back on my feet, quite literally.

Alex Dainty

(Annotated from the NRH annual report)

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