The Ultimate Price for Mum of Disabled Daughter

Photo of a row of empty blue chairs in a waiting room. A side table to the left has holders with NHS leaflets, a single beige teddy bear sits alone on the centre seat.

DISCLAIMER: This post has sensitive content that centres around the tragic news story of a Mother of a disabled child who committed suicide. All facts stated in this post are pulled directly from press coverage, so I will not be held liable. Original source is in the ‘related links’ at the bottom of this post. PLEASE use your best judgement before proceeding. 

I couldn’t read the devastating account of what happened with loving Mum of 2, Jane Kavanagh without pushing other blog post commitments aside tonight to write about everything that is wrong and could be learnt from by so many organisations in a position of power on this case.

Life of a Full-time Carer

33 year old Jane Kavanagh was a happy, loving Mother of two teenage girls living local to me in the Rochdale Borough of Greater Manchester. A single Mother, who had a good amount of support from her own Mother and Father, especially for her eldest daughter (let’s call her Alice for the sake of this blog as obviously the children’s identities are protected by law) who needed round-the-clock care and attended a specialist residential school for children with disabilities.

Alice was diagnosed with autism as a young child and later aged just 12, following the onset of mobility problems was diagnosed with Cerebellar Ataxia.

Cerebellar Ataxia is a disorder caused by damage to the cerebellum (a part of the brain that’s responsible for gait and muscle co-ordination). The term Ataxia refers to lack of voluntary movements. Primarily diagnosed in childhood and with sudden onset of symptoms. Patients have difficulties accomplishing everyday tasks without help, co-ordination in fine motor tasks and anything requiring the voluntary muscles. This can range from mild to severe and in some cases can also affect speech, eye movement, mobility and cause intense headaches and dizziness.

The combination of both conditions meant the 15 year old needed 24hr 1-1 care at home, at school her care needs were funded and met. Jane endured 15 years of fighting for support in the home and much needed respite. Many parents of children with complex needs will tell you that in order to get adequate support, you literally have to be falling apart and at breaking point. Government funding for in-home care to support families like the Kavanagh’s is depleting by the day, people with disabilities being one of a number of vulnerable groups of individuals in this country to be hit by the Tories.

As Alice’s needs became greater than their home or her Mother could manage, with the accessible housing crisis playing a huge role in the outcome of this case, Jane and her 2 daughters moved into her parents home so she could share the care load with them as Rochdale Council had so badly neglected to provide suitable support. Sadly this was only a short term solution, as the council undertook an assessment of the grandparents property and found it unsuitable for Alice’s needs both in the long and short term. Forcing them to be rehoused again.

Only thanks to lack of accessible properties for disabled people – specifically full-time wheelchair users, they were moved to a bungalow that wasn’t all on the flat, Jane still had to contend with getting her profoundly disabled teenage daughter upstairs to her bedroom and the house was rife with walls coated in nicotine. So not only was the move to this property in a sense, pointless as it was equally not fit for Jane’s daughter but now they were living in unhealthy conditions.

Without Jane’s parents on hand for support and in a property unsuitable for Alice’s limitations, aswell as in a dire state, Jane began to have suicidal thoughts over the course of several months to which she alerted her GP.

Domino Effect

The GP Practice advised a depressed and suicidal Mother and full-time carer to self-refer to get some help from her local Healthy Minds – Healthcare clinics that are aimed at those experiencing anxiety, low mood, OCD, PTSD or Post-natal depression, yet confirmation can be found on their NHS website that they are NOT for people in a state of emergency (e.g with suicidal thoughts) or desperation. Despite Jane made her GP aware that her thoughts were indeed suicidal in nature, she was left to seek inadequate support for herself at the lowest point in her life.

In April 2018, Jane rang her GP Practice again and asked the receptionist (who isn’t a medical clinician) for an appointment that day as she was feeling suicidal. Instead of getting Jane seen immediately by the emergency mental health team, she was simply and passively given a GP appointment for in 12 days time.

That day she dropped her daughters off with their grandparents for what they believed was to be a mere few hours but in fact was for the last time, only to return to those nicotine stained walls in the not fit for purpose properly, with zero support for her daughter, nevermind herself and took her life…

The case has triggered an inquest into why Jane, a vulnerable single Mum with a disabled child was not taken seriously when she expressed Twice, she was suicidal. Rightly so! There’s so many questions that spring to mind.

Why are receptionists with no medical background or knowledge making decisions on how long somebody can wait for an appointment?

I say prural because I know first hand at my GP practice, when I ring with the 1st signs of a Chest Infection (an often fatal occurancd in people with breathing weakness as part of their Neuromuscular condition), it is upto their receptionist if she deems me sounding bad enough, over the phone, to be worthy of a same day appointment.

Why did the individual who saw Jane months prior, on her first mention of suicidal thoughts feel it appropriate to advise her to self-refer to a clinic not meant for people in crisis?

Reaching out for medical help for anything mental health related takes tremendous courage as is, that is magnified tenfold when you’re reaching out to say you’re thinking of ending your life. Did this person have ear muffs on? Were they not paying attention? The poor woman said she wanted to End. Her. Life! Those 3 words should of triggered a serious reaction from these trusted professionals. Telling her to self-refer would of been like a slap to the face, oblivious to her desperation. Or did they simply not believe her? Maybe they thought she was exaggerating? Many parents who are full-time carers end up with anxiety/depression related to the circumstances they find themselves in, perhaps they hear it that often from parents like her that they simply didn’t think much of it? Perhaps it is to be expected? Normal even….

And that’s just on the suicide prevention that could of occurred, that could of been the difference that day.

Respite & Homecare

Jane’s journey trying to obtain help on the weekends with her daughter is common place. When a child like Alice with complex, 24hr care type needs grows, so do their needs and so do the needs of the primary carer. It isn’t clear by the press releases on this story what kind of support was offered, if it could of been tweeked so it may of worked to some extent or if what the council were offering really was unsuitable for this family. We don’t know if Alice’s needs were too much for a social care agency to come in to help get her up, washed and dressed, ready for the day. Or if Jane ended up doubling up with an agency carer (as does happen when individual health budgets don’t stretch to two carers) and in that case it wouldn’t of been a break for Jane. Perhaps they wanted her to manage a Direct Payments account for her daughter but Jane simply didn’t have enough of herself left to be an employer too! All these scenarios are possible, as I know only too well from personal experience growing up as a disabled child watching my own Mum faced with the same dilemmas and knowing countless other families now. Things haven’t changed, if anything they’ve worsened with this Tory led Government who took away the Independent Living Fund (ILF) in 2015 and would rather put children like Alice in residential homes for elderly people with dementia and the sorts, that give them adequate funding to remain living independently with their loving families.

It creates a lump in my throat to think that I may of even unknowingly come across a post on Facebook from Jane at some point in the many support groups their are for families struggling support wise with lack of funding from local councils.

Accessible Housing Crisis

To make matters worse, this family were ripped from the only support network they had – doting grandparents for the sake of an assessment that deemed the grandparents home too inadequate for Alice’s mobility restrictions. Yet, the insanity, the Insanity that they were ripped from one unsuitable property to another! Those not in the “Disabled World” may think this part is extremely far fetched, that their must of been crossed wires or exaggeration somewhere but I can tell you that I 110% believe it. Why? How am I so sure? Read my blog on our housing situation and you’ll see how the accessible housing crisis means there’s next to no properties for them to find one that even came close to meeting the needs of a families like theirs.

Councils are only able to put us where there are properties that better our situation, even if its just a slither of an improvement. So for the Kavanagh family, it could of meant maybe Jane didn’t have to heave her daughters wheelchair up 3 steps to get into the house anymore, yet still had to get her up a flight of stairs to bed. They’d of likely been waiting years on the Disability Housing Register, waiting for that needle of a haystack property that’ll only become available if some poor family loses the very person they’re living there to benefit for. That’s how scarce these wheelchair-friendly properties are.

There is however an INCREDIBLE charity trying to help families called Habinteg Housing Association who are building accessible properties in various places of need up and down the country. Sadly funding for this scheme only stretches so far and therefore Habinteg are only able to plan developements in areas with the most amount of people in need of accessible properties. So if you do not live in one of these more sort of areas, then to be in with a chance of getting a property via them you’d have to move to a different area – possibly miles and miles away from everything you’ve ever known for the sake of being able to mobilise within your own home. Their waiting lists are huge too, some people are waiting months or several years depending on need and location. My hope is that Habinteg will continue to grow, receive more and more financial support so they CAN help more people but for now, there’s so many still in great need.

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Photo Credit: @samrenke Twitter

Help improve support for respite or accessible housing for families with children living with complex disabilities, social media campaigns are a great way to do so! Use your people power and voice to say you support the Family Fund – who support families with funding for tailored respite packages or short breaks and / or Habinteg Housing Association with their #ForAccessibleHomes Campaign – raising awareness of the dire need of more purpose built accessible properties. 
Talking about these important matters, could literally save lives. The bigger the voice, the louder and more likely we’ll be heard!

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Related Links – 

Screenshot of the online thumbnail of the original news piece. Features smiling black and white photo of the Mother
Mum of Disabled Daughter Killed Herself Struggling to get Help – Manchester Evening News 26.10.18

A Commitment to Creating Accessible Housing should be the Norm – InsideHousing 7.2.18

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