THE WOMEN BAT­TLING TO STOP UN­NEC­ES­SARY AMPUTATION­S

York­shire pa­tients who have suf­fered lifechang­ing leg wounds are back­ing a new cam­paign to im­prove NHS care and re­duce pre­ventable limb amputation­s. Chris Burn reports.

Yorkshire Post - - FRONT PAGE - ■ Email: chris.burn@jpi­me­dia.co.uk ■ Twit­ter: @chris­burn_­post

If I can help other peo­ple from my ex­pe­ri­ence then it has been a pos­i­tive. I was quite up­set when I had to have my sec­ond leg off. But I thought ‘crack on’ – I was get­ting mar­ried six weeks later.

Kara Keal, dou­ble am­putee and sup­porter of the Legs Mat­ter cam­paign

WHEN KARA Keal de­vel­oped a blis­ter on her foot af­ter a night out with friends in Black­pool, she could not have imag­ined that within two years she would have lost both of her legs be­low the knee to emer­gency amputation­s. In­cred­i­bly, she de­fied this night­mare sce­nario to walk down the aisle at her wed­ding with her pros­thetic limbs just six weeks af­ter the sec­ond am­pu­ta­tion.

Keal is de­ter­mined to do ev­ery­thing she can to pre­vent oth­ers suf­fer­ing a sim­i­larly trau­matic ex­pe­ri­ence to what she went through around 15 years ago and now the 50-year-old from Os­sett is sup­port­ing the re­cently launched Legs Mat­ter cam­paign, which is both de­mand­ing im­proved care stan­dards for leg wounds from the NHS and giv­ing pa­tients in­for­ma­tion on how their con­di­tions should be treated, as well ad­vice on ways to pre­vent prob­lems from oc­cur­ring in the first place.

“If I can help other peo­ple from my ex­pe­ri­ence then it has been a pos­i­tive,” says Keal.

Keal’s prob­lems be­gan when she was 34. Hav­ing been di­ag­nosed as a Type 1 di­a­betic when she was seven, she lived a nor­mal life with the help of an­tibi­otics. But af­ter get­ting a blis­ter on her left foot from the shoes she was wear­ing on her week­end away with friends in Black­pool, she de­vel­oped a di­a­betic foot in­fec­tion and she ended up in hos­pi­tal. Doc­tors ini­tially re­moved her big toe and then part of her foot in an at­tempt to pre­vent the in­fec­tion spread­ing. But with the wound be­com­ing sep­tic and putting her life at risk, more dra­matic surgery was re­quired.

“The sur­geons said the only thing we can do is take your leg off be­low the knee,” she re­calls. “I was quite dis­tressed but it was a bit mat­ter of fact, there was no other way. I woke up the next morn­ing and I have never felt as well in my life. I had got a full face of make-up on by the time my son ar­rived to see me in hos­pi­tal. Six weeks later, I walked to school to pick him up with my pros­thetic leg. His face was a pic­ture when he saw me.”

But as she was ad­just­ing to a new way of life, less than two years later Keal de­vel­oped an­other di­a­betic foot in­fec­tion from a blis­ter on her right foot she got af­ter burn­ing it on a ra­di­a­tor. And in con­trast with what hap­pened on the first oc­ca­sion, Keal says the care she re­ceived for the wound which de­vel­oped was deeply flawed.

“I had dis­trict nurses and I will never have one in my house again. I think I could have done what they needed to do bet­ter than they did,” she says.

Keal says hav­ing been through her first ex­pe­ri­ence, she more eas­ily picked up on in­stances of poor prac­tice, such as one nurse who an­swered the phone while do­ing her dress­ing and then went back im­me­di­ately to treat­ing the wound with­out tak­ing any steps to pre­vent cross-in­fec­tion.

Keal says that soon af­ter­wards it was sug­gested by dis­trict nurses that her wound was heal­ing, but when it was checked in hos­pi­tal by a spe­cial­ist the wound was black and her right leg was am­pu­tated be­low the knee the next day. “I was quite up­set when I knew had to have my leg off. But I thought ‘crack on’. I was get­ting mar­ried six weeks later and I did man­age to walk down the aisle. I have al­ways lived life to the full. When I lost my first leg, I had just split up with my first hus­band and I was on my own. My son was seven and he was ac­tu­ally my carer at one point. When I look back, I feel for him rather than my­self but what has hap­pened has hap­pened.”

An­other sup­porter of the Legs Mat­ter ini­tia­tive is 40-year-old Tracy Good­win from Wake­field, who has had to deal with decades of prob­lems linked to a leg ul­cer. At one point, the mum-of-two was find­ing it so painful and de­bil­i­tat­ing she asked doc­tors to am­pu­tate her leg but they in­stead per­formed a deep vein trans­plant to ease the pain.

Good­win de­vel­oped deep vein throm­bo­sis when she was 20 and preg­nant with her first child and it oc­curred again when he was born. “It dam­aged my veins and I didn’t re­alise the im­pact at the time,” she says.

“When he was about three years old, I knocked my left leg. It went into a lit­tle blood blis­ter and ei­ther the next day or the day af­ter when I was look­ing af­ter my son and my neigh­bour’s son it just started bleed­ing like a foun­tain.”

Ini­tially, the wound was not treated as an ul­cer and it was not un­til she saw wound spe­cial­ist Dr Leanne Atkin, one of the driv­ing forces be­hind the Legs Mat­ter cam­paign, that it was iden­ti­fied as such and prop­erly treated. “Leanne was the first one to say this is a leg ul­cer. It healed within about 12 weeks. At the time that seemed a ridicu­lous amount of time but look­ing back it wasn’t at all.”

The prob­lem re­oc­curred three years later in 2005 when Good­win banged her leg on a flight back home from hol­i­day. “From that point on­wards it took the best part of 14 years to heal. We tried ev­ery­thing – it got smaller, it got big­ger. I had two small chil­dren and I was in so much pain that for about 18 months I couldn’t even get up the stairs. I used to sleep down­stairs so I could put on the telly to dis­tract my­self from the pain.”

Good­win’s ul­cer was fi­nally healed ear­lier this year with a new form of treat­ment and she says she has been in­cred­i­bly for­tu­nate to have been sup­ported through­out her bat­tle by Atkin and spe­cial­ists at Pin­der­fields

Hos­pi­tal. How­ever she says she has also ex­pe­ri­enced poor lev­els of care, in­clud­ing from a phar­ma­cist she ini­tially saw who failed to ad­vise her to visit a GP as well as from a prac­tice nurse who im­prop­erly ap­plied compressio­n ban­dag­ing and left her leg with “the big­gest dents you have ever seen”.

Atkin, who is chair of Legs Mat­ter as well as be­ing a vas­cu­lar nurse con­sul­tant for the Mid York­shire NHS Trust and a lec­turer at Hud­der­s­field Univer­sity, says sto­ries of in­ad­e­quate care such as those ex­pe­ri­enced by Keal and Good­win are preva­lent. “One of the ma­jor prob­lems is that pa­tients can’t recog­nise bad or good care. They might have had a wound for 12 months and that poor pa­tient is send­ing their nurse a Christ­mas card be­cause they think they are friendly. But re­ally the care has been rub­bish. Legs Mat­ter can em­power pa­tients to know what is right and what is wrong in terms of their treat­ment.”

Atkin says it is re­ported up to 80 per cent of ma­jor limb amputation­s are pre­ventable, while ma­jor am­pu­ta­tion rates are 30 per cent higher in the North com­pared to the South. She says this fig­ure is thought to be down to higher lev­els of obe­sity and di­a­betes in the North, as well as vari­a­tions in the com­mis­sion­ing of NHS ser­vices.

She says cur­rent statis­tics that fewer than half of pa­tients with leg ul­cers cur­rently heal within 12 months and wound care costs the NHS £5.3bn per year can be dra­mat­i­cally im­proved with some sim­ple steps. “We need a whole sys­tem change to get these pa­tients to heal. We can re­duce treat­ment time, cost and pa­tients suf­fer­ing. The hope is to change the sta­tus quo.”

PIC­TURES: TONY JOHN­SON

RAIS­ING AWARE­NESS: Dr Leanne Atkin, driv­ing force be­hind the Legs Mat­ter cam­paign, with Kara Keal and Tracy Good­win.

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