Neuromuscular Care (North-West)

Mark Durkan Excerpts

Wednesday 9th February 2011 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Weaver Vale (Graham Evans) on securing this debate, which is important to many people. Although the title of the debate refers to neuromuscular services in the north-west, my constituency neighbour the hon. Member for East Londonderry (Mr Campbell) and I come from the north-west of a different island. This is not revenge for the map-reading errors that many of us would have heard excuses for over the years in border areas in Northern Ireland, nor is it an attempt to hijack this debate. I want to give positive support to the articulate efforts of the hon. Member for Weaver Vale, who spoke compellingly about what muscular dystrophy can mean for the individuals affected and their families.

Unlike the hon. Gentleman, I do not have a relative who suffers from muscular dystrophy, but I remember being particularly impressed by a young constituent of mine and his family. My constituent, who unfortunately died a couple of years ago, was named Donovan McKeever. When his parents, Brendan and Teresa, heard Donovan’s diagnosis, they were confounded by the degree to which nobody knew what to say to them or what they were talking about, asking about or looking for. Donovan’s father Brendan wrote a small book about his experience, titled “It Shouldn’t Have to Be Like This”.

Unfortunately, when a child is diagnosed with muscular dystrophy—this also happens with many other conditions, such as autism—parents often have to navigate systems and negotiate between services as though they were the first to find themselves in that situation. The hon. Gentleman’s speech reflected such frustrations. Because people know the good work of the Muscular Dystrophy Campaign and know that it is a recognised disease, they assume that care services are in place and that the system kicks in and knows what to do, how to pass people on and how to connect services. They assume that key workers exist to ensure that needs are met, whether that involves a disabled facilities grant for adapting housing, or assistance deciding which school environment will be most conducive or accessible. Families need support, and they expect the system to provide it. For people with muscular dystrophy—Donovan had Duchenne muscular dystrophy—that does not always happen.

The hon. Gentleman mentioned the importance of care advisers, as did the hon. Member for East Londonderry in his intervention. Northern Ireland has a muscular dystrophy care adviser, but unfortunately the funding for that care adviser is committed only until the end of March, and no long-term funding is in place. Not only are things not as they should be, but the existing service and the commitments that have been made may well disappear in the context of budget squeezes and other changes.

We should use this occasion to call for better services, planning and support, not just in the interest of individuals with such conditions and their families but in the interest of providing well-managed public services and savings. The hon. Member for Weaver Vale mentioned unplanned emergency admissions. Some 2,000 people in Northern Ireland suffer from muscular disease, and their unplanned emergency admissions cost at least £2.25 million a year. Better and more appropriate and available services would lead to savings. Making people present themselves in a less appropriate context puts pressure on other services and adds to costs, which is not efficient. Cutting corners in such areas in the name of efficiency savings is wrong, and some of the cuts and squeezes taking place are counter-efficient.

I know that the Minister is particularly concerned about the health services that the hon. Gentleman and I have mentioned. The issues on which patients need to engage the public policy system are not confined to clinical presentations. In the context of some other changes that the Government are introducing, such as changes to disability living allowance and medical assessments, I would hope that the Minister acts as an advocate for patients with muscular dystrophy to ensure that they are not overburdened by medical assessments. They find it difficult enough to navigate the system and get the services that they expect; it should not be made harder for them to get support such as disability living allowance and the mobility component.

On the intended removal of the mobility component of DLA from people in residential care, many young adults with muscular dystrophy choose to live in a residential care setting because of their situation. Their parents may have passed on, and other family members may have moved on. It is nonsense for people who have made that choice to lose the mobility component, with all the social support, access, personal outlets and socialising that it allows. I hope that this debate is not purely about the important issue of clinical and medical services for those with muscular dystrophy; I hope that we will take a holistic approach to people’s particular needs.

The hon. Member for Weaver Vale mentioned specialist multidisciplinary care. If we break the issue down to our different locations, whether we are talking about the new single commissioner for Northern Ireland, the Health and Social Care Board—

[Philip Davies (in the Chair)]

Order. I do not wish to interrupt the hon. Gentleman’s flow, but I hope that he appreciates that the terms of the debate relate specifically to the north-west. Although his comments on Northern Ireland are interesting, I hope that he will tie them in to the situation in the north-west, as that is the title of the debate.

[Mark Durkan]

I fully accept your admonition, Mr Davies. I made that point at the start.

If we consider specialist multidisciplinary care in relation only to different localities—whether primary care trusts and GP-led commissioning in the north-west of England or purely within the devolved regions of Scotland or Northern Ireland—we might miss a point. In the case of rarer diseases and conditions, a bigger commitment and wider consideration at a UK level provides a better context of scale. As we have heard, individual GPs sometimes are not good at responding to particular needs or realising the importance of a condition because they do not see enough instances of it. That problem applies not only to GPs but, more broadly, to other services and public management bodies.

I hope that, during the Minister’s tenure, the Joint Ministerial Committee, which brings together Ministers from the devolved entities as well as those from Whitehall, and the British-Irish Council will undertake initiatives to examine whether we can learn lessons from one another. When I was a Minister in the Northern Ireland Assembly, I was privileged to attend the council’s very first meeting. I remember the late Donald Dewar saying that one of the most undervalued art forms was plagiarism and that we needed a vehicle to bring together public policy planners and overseers, such as Ministers, from different parts of these islands. We need that not just in order to see who is doing well at what and to copy them, but in order to be honest and admit what we are all doing badly; to discuss the serious issues that we are not doing enough about; and to constantly agree, as public representatives, that more should be done and that there should be better laws, better services and better funding. If we cannot do enough of that in relation to our own individual pressures, perhaps the British-Irish Council and the Joint Ministerial Committee can together ask some of the fundamental questions, at the heart of government, that were raised by the hon. Member for Weaver Vale.